Tag Archives: human rights

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My first ever podcast for ‘The Dementia Monologues’ – on rights and dementia

human-rights

 

In 2015, I published a chapter in my second book on dementia, entitled ‘Living better with dementia: good practice and innovation for the future’, chapter 13 here. This contains a review of the cu

I am now proud to introduce my first ever podcast in a series which I have called ‘The Dementia Monologues’. It is on the subject of ‘dementia rights’.

 

The text of my podcast is below, in case you’d prefer to read it.

 

My name is Dr Shibley Rahman – and I am an experienced researcher, and a academic physician and academic lawyer by training.

 

This is the first of my series of podcasts which I’ve called “The Dementias Monologues”.

 

I hope you like them.

 

The law can be an ass, and its problem is that it represents only one source of rights.

 

As an advocacy tool, to say you have rights is important. Just look at Rosa Parks.

 

Civil rights activist Rosa Parks refused to surrender her bus seat to a white passenger, spurring the Montgomery boycott and other efforts to end segregation.

 

But it is the case that the law (and, more precisely, the State) considers itself ‘within its rights’ to deprive you of your liberty, under certain circumstances.

 

People beyond a diagnosis and care partners are crucially different in one aspect at least – they are not criminals, but coming to terms with a medical diagnosis.

 

The issue comes when certain features quite unique to dementia, such as loss of decision-making capacity, can interfere with the State’s decision to deprive you of your liberty.

 

And views differ somewhat astonishingly.

 

Like most law, there are nuanced arguments, but it is my contention that placard or shroud waving about rights is not enough at a local level for this, although it is strongly desirable to imbue an ethos of ‘rights activism’.

 

Reading something recently reminded me of how my own late father has been passed up for an opportunity on account of him being “colour-blind”.

 

Visual disabilities are interesting, but these disabilities occupy an unique position at the cusp between physical and mental health.

 

In fact any physical pathology in the visual pathway from retina to cerebral cortex in the brain can lead to an alteration in visual perception.

 

Visual disabilities are therefore interesting as they represent the entire spectrum from the medical model to the social model of disability.

 

Cataracts, or opacities of the lens in the eyes, are entirely peripheral.  Monet’s change in colour styles can be attributed arguably to his development of cataracts.

 

Cataracts can be ‘fixed’ medically as a day case surgery with laser treatment.

 

Compare this on the other hand to a dementia which affects the higher order visual processing in the brain.

 

This could happen, for example, in any dementia such as Alzheimer’s disease, and gets called ‘posterior cortical atrophy’.

 

But that is not the whole story.

 

“Rights based approaches” hardly trips off the tongue, and it took me considerable time to get to the bottom of what it’s all about.

 

The last big thing, a ‘dementia friendly community’, I feel, was wrong at so many levels.

 

The word ‘friendly’ was wrong, furthering a sense of oppression in a community which was far from homogenous in the first place.

 

At best it was merely patronising.

 

It further consolidated the notion of people who happened to have been given a diagnosis of dementia as passive recipients of services.

 

The human rights approach is not simply a list of possible ‘nice to have’ legal rights from your local Citizens Advice Bureau.

 

It is a CRITICAL way of holding large healthcare providers to account at one end, in terms of upholding dignity, privacy, and so on, and also in promoting the fundamentals of citizenship.

 

The Law Commission in their recent pamphlet (No 372) entitled “Mental Capacity and Deprivation of Liberty”, I felt, set out rather neatly the various problems with this area highly relevant to people living with dementia.

 

“It is not acceptable to continue with the current system where many people’s rights have become theoretical and illusory.”

 

In European rights convention law, a major instrument governing human right, article 5(1) of the European Convention on Human Rights provides that no-one shall be deprived of liberty unless the deprivation is carried out in accordance with a procedure prescribed by law.

 

It is necessary in a democratic society on one of a number of grounds (including, notably, “unsoundness of mind”).

 

Article 5(4) provides that everyone deprived of their liberty is entitled to take proceedings by which the lawfulness of their detention shall be decided speedily by a court, and their release ordered if the detention is not lawful.

 

In summary then, the underlying aim of Article 5 is to ensure that no one is deprived of liberty arbitrarily.

 

This essential human right belongs to everyone – including, crucially, people living with dementia.

 

I believe therefore in ‘dementia activism’, therefore, there should be practical operation of campaigning for rights.

 

It is true that human rights are universal and inalienable, but also for people in England and Wales nobody is above the law (the ‘rule of law’).

 

This is the practical heart of the issue.

 

For example, on 19 March 2014, the Supreme Court handed down its judgment in “Cheshire West”.

 

Lady Hale, giving the leading judgment, held that human rights are the same for everyone.

 

As Lady Hale put it (at paragraph 33):  “The first and most fundamental question is whether the concept of physical liberty protected by article 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled.”

 

In particular, the judgment undoubtedly “pushes to centre-stage the understanding that human rights are universal and that what it means to be deprived of liberty must be the same for everyone, whether or not a person is disabled“, as indeed stated by the Law Commissioners recently.

 

The nuclear weapon for people with dementia I feel is the UNCRPD.

 

And the nuclear arsenal is completed by two incredibly influential advocates who “mean business”.

 

Prof Peter Mittler CBE and Kate Swaffer of Dementia Alliance International, a powerful advocacy group run by and run for people with dementia, ensured that the UNCRPD rose to the top of the agenda.

 

UNCRPD stands for the ‘United Nations Convention on Rights for People with Disabilities.”

 

There are two articles in the UNCRPD which I think can be used to uphold the rights of people with dementia in the jurisdiction of England and Wales.

 

One of Articles of note is Article 12.

 

Article 12 of the UN Convention on the Rights of Persons with Disabilities provides that disabled people are entitled to legal capacity on an equal basis with others in all areas of life.

 

Crucially, Article 12(3) obliges State Parties to provide access to the support that disabled people may require in exercising their legal capacity

 

Rights are not the only solution, however.

 

If a 55 year-old female with dementia in a wheelchair, also living with multiple sclerosis, finds herself discriminated against, she might also have a valid claim in sex discrimination, age discrimination, or disability, depending on the material facts.

 

But to ignore the impact of inadequately addressing physical and mental health issues, as well as accommodation of disability, are significant barriers to participation in dementia friendly communities.

 

As Lady Hale put it (at paragraph 33):

 

“The first and most fundamental question is whether the concept of physical liberty protected by article 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled.”

 

I feel, particularly, that a rights based advocacy offers a mechanism to campaign as a social movement.

 

People with dementia, numbering 47 million in the world, deserve to be treated as equals, not just to be ‘friendly to’.

 

Victimhood is sometimes unwittingly exacerbated by big corporate fundraisers – which is why we all need to be vigilant.

 

A rights based approach may help to reset the compass on a certain perception of dementia.

 

There’s nothing too small to make a difference.

 

“Anyone who doesn’t believe that small things don’t make a difference obviously has never slept with a mosquito.”

 

That’s from Malcolm Tucker.

 

Yes – for rights based advocacy, it’s important also to ‘sweat the small stuff’.

 

@dr_shibley

 

 

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Bringing dementia rights home

 

A previous Government in 1997 launched a white paper consultation into the future of human rights legislation in England and Wales. This document called ‘Bringing rights home’ set out the then Government’s intention to bring onto the statute books a way in which parliament could make it straightforward for its citizens to bring human rights case, without petitioning Strasbourg directly. Access to the European Court of Human Rights in Strasbourg was considered too costly and time-consuming.

Unless England and Wales stop being signatories to the Council of Europe, which is another component of uncertainty from the current administration, citizens in England and Wales will still be able to petition Strasbourg directly, as has been made clear for some time by their Lordships specialising in human rights.

Britain, under a previous Conservative government, had a major influence in drafting up the current European Convention of Human Rights. The rights themselves, such as a right to be free from torture or degrading treatment are  pretty uncontroversial themselves. They are a huge factor in allowing citizens to hold their Governments to account. Under current legislation, the Human Rights Act 1998 in England and Wales gives citizens ‘rights’ against anyone carrying out a public sector function such as local authorities for breaches of human rights, and there are few sectors as important in this regard as health and social care.

“Dementia Rights” is a new initiative I have designed, which I intend to launch in Dementia Awareness Week. Dementia Rights, building on the success of “Dementia Friends”, sees dementia not from the perspective of someone who is ‘dementia friendly’ but from the person living with dementia and doubtless many other co-morbidities.

A right gives a person with dementia a license to do something, and these rights are currently legally enforceable through a number of routes. For example, the Equality and Human Rights Commission will see the occasional case of someone discriminated against on the grounds of living with dementia.

The logic is particularly relevant for someone living with a young onset dementia, that is a dementia which has shown itself before the age of 65. These tend to be dementias which are in the early presentations of some traditional late onset dementias, or late presentations of young adult or childhood conditions. They are not merely dementias which have been diagnosed early.

Such citizens tend to have young families or serious work commitments. They particularly need protection against unfair dismissal, that is dismissal for no good reason in no fair way, on the grounds of a disability. This is disability discrimination. The Equality Act (2010), which is not being abolished, indeed brought forward by a previous Labour government but in fact rooted in a consolidating act from previous Conservative instruments, defines dementia to be a disability. If it were to recognise formally a sustained cognitive impairment as a disability in keeping with their definition of a “disability” as “that which has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” in this context, it would be much easier to bring cases to employment tribunals for people being sacked due to a sustained cognitive impairment.

If the ‘Dementia Rights’ initiative works, run by Dementia Rights Champions, it will help to embed a rights based consciousness in society. I do not intend to pitch it at any commissioners, though we do need to have some accurate measures of its benefit and outcomes. I intend rather to make it freely available as ‘open source’ in the best spirit of Paul Mason’s work on post-capitalism.

Launching in ‘Dementia Awareness Week’, I hope this will bring an added, a much needed further dimension, to living with dementia apart from future cures and other (predominantly reductionist biochemical) research, ‘dementia friendly communities’ and a social care system on its knees.

‘Dementia rights’ consists of a number of activities designed to encourage a discussion about the unique importance of rights for people with dementia, to emphasise five key messages: these messages are that rights apply to everyone and ought not to be taken away, rights go together with responsibilities, dementia is in law a disability, it is possible to enforce legal rights. and a major function of human rights law is to protect against discrimination.

I am grateful to all members of the public who have expressed an interest in this initiative of mine. I think none of this would have been possible had it not been for the groundbreaking work of Dementia Alliance International working in a strategic alliance with Alzheimer’s Disease International, in particularly the leadership shown by Glenn Rees and Kate Swaffer.

I am, in addition, particularly grateful to two members of the Queen’s Counsel, in the legal profession, who have shared the five key messages. Rights can be restricted in a legal away, but as soon as you deny rights unfairly, such as denying a right to complain, a right to a care home reflecting your sexuality, or a right to culturally appropriate diet, you are on a slippery slope.

The rights based approach is not supposed to replace the medical approach of diagnosis and cure, but I feel has substantially more to offer the rehabilitation and enablement approach pervasive from the social model of disability. A correct diagnosis of dementia should be helpful to all recipients of that diagnosis, not an encumbrance, and I feel promotion of dementia rights locally as well as internationally is now essential for this. Call it ‘Bringing dementia rights home’ at last.

 

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Where would repeal of the Human Rights Act leave rights based advocacy for dementia?

high court

Tomorrow is in fact the day of the ‘Legal Aid walk’ – the annual event where law firms, law students, barristers, solicitors and supporting staff take to the streets in the heart of London to walk a fair old distance in support of legal aid and access to justice.

This is very timely. Law is one of my strong interests; so is dementia. I am in fact trained in both. This is why the imminent plan to repeal the Human Rights Act 1998 is of great significance to me. I have written previously on the huge importance of rights based approaches to dementia in my blogpost here, and I have even devoted a full chapter on it on my new book on domestic and global dementia policy. But even academic lawyers would be the first to admit they’re not astrologers; the future of the legislation on human rights is clearly unchartered territory even now.

There will be very many accounts of the view that repealing the Human Rights Act is a backward step in the law, many given by many eminent lawyers. I do not want to go over the same ground here, but needless to say they are widely available; such as by Philippe Sands or Keir Starmer.

The Conservative Party’s plan to establish a Bill of Rights to replace the Human Rights Act has helpfully been published. It was a clear manifesto pledge. If the opinion polls were correct, no one party expected to win the general election outright, so it’s quite likely the Conservative Party wished to lose the pledge on abolition of human rights to negotiation with the Liberal Democrats, for example. It is currently reported that the SNP wish to ‘fight attempts to abolish the Human Rights Act’. And it has been a longstanding commitment of the Scottish jurisdiction to promote ‘rights based approaches‘ in dementia for people with dementia and carers.

Whatever happens in the term of this parliament is unpredictable. Whilst the “Salisbury convention” provides that manifesto pledges should see the light of day on the statute books, it is also clear that there is a significant number of peers who will not condone abolition of the Human Rights Act. Lord Lester, a Liberal peer, has made it clear on the BBC Radio 4 programme that he does not want to make ‘wrecking amendments’, but takes the attitude that he does want to make the proposals ‘better law’. The Conservative Party have tried to send out the message that the proposed change in the law is not to abolish human rights, but the fact that Labour have just appointed Lord Charlie Falconer QC to spearhead the charge of the brigade as Shadow Lord Chancellor and Shadow Minister of Justice is very telling. Lord Falconer was indeed one of the architects of the original Human Rights Act under a previous administration. All it needs is for a “magnificent seven” in number to rebel; probably the Democrat Unionist Party are not the ones too, but ‘grandees’ with a legal training Ken Clarke QC MP and Dominic Grieve QC might.

Changes to the law theoretically offer an opportunity to include new ‘rights’, such as the right to a timely diagnosis of a medical condition. It is critical to note that not all rights in rights based advocacy for dementia come from human rights; there are rights in equality law which mitigate against discrimination, and rights in employment law which mitigate against unfair dismissal, for example. It is also important to note that not all rights are legal; for example it was morally repulsive to allow segregation under Apartheid in South Africa before a change in the law was afforded. There is therefore some basis to the messaging that rights existed before the Human Rights Act; they have done so since the Magna Carta in fact.

And rights have to be enforceable. At the moment, in England, there is a huge problem with access to justice, hence the importance of such initiatives such as the Legal Aid Walk. Legislation from the previous government in the form of the Legal aid and sentencing and punishment of offenders act 2012 was hugely detrimental for this cause, with concomitant destruction of law centres. Human rights are indeed enforceable through, for example, the High Court under judicial review, or through the Equality and Human Rights Commission.

But the critical thing about human rights is that they’re not as such ‘British rights’. They’re international, inalienable, available to everyone – they’re universal. Whilst we are still signatories to the European Convention on Human Rights, any British citizen is free to petition Strasbourg directly over an issue to do with human rights; it would be a huge deal if the UK sent out a message that it no longer wished to be a signatory of the Convention when it was originally one of its architects. Even with abolition of the Human Rights Act (1998) in this jurisdiction, dementia can still come under disability under the UN Convention for People with Disabilities (“UKCPD”). This statutory instrument has a whole host of rights, including the right for democratic representation and right to participate in public life (article 29) ( which the World Dementia Council would be wise to read). The UK may or may not be under current investigation for breaches of the UKCPD, and we are in any case observing the United Nations Declaration of Human Rights.

These rights are wide-ranging and important for our political narrative. They’re relevant to our discussion of capacity, that people with dementia have human rights regardless of their capacity (related cases such as the Bournewood Gap are particularly important here).  Such rights are relevant to various issues, such as “independent living”, and we can learn a lot from the wider disability movement here (such as the brilliant work of John Evans).  As indeed human rights are important for the devolution and Good Friday agreements, the discussion over human rights indeed embraces a wide range of stakeholders involved in dementia policy, such as SCIE, where dignity is intimately related to a right to be free from degrading treatment (see their guidelines). And unsurprisingly human rights are totally pervasive to the work of the Care Quality Commission. The success of human rights has been much to do with motivating a ‘social movement’, imbuing a sense of ‘rights consciousness’ in keen followers around the world.

I personally am a big advocate of ‘bounded rationality‘ in strategising about the future, in dealing with risk and uncertainty.  The discussion over human rights is clearly politically driven, but is essentially for me about protecting those people who are most vulnerable too. Living better with dementia policy is much enhanced with a rights based approach. Some strands in the debate are rational; some less so. But we are living in uncertain times, and political tensions are high. Soon places of the jigsaw will fall into place, and we will all be able to deal with it at the time.

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Whole person care and human rights triumph at #globaldementia

Full details of this conference are here.

Rosa Kornfeld-Matte (Independent Expert on the enjoyment of all human rights by older persons, mandated by UN Human Rights Council) was asked to speak.

This is a subject which interests me as I have been invited to an expert panel session at the Mental Health Foundation later this month on the subject of dementia as a disability.

MHF

Mark Pearson also spoke from the OECD on organising dementia care and services.

Pearson rightly in my opinion drew attention to the notion that people living with dementia do suffer from poor quality services.

More than half of people are not diagnosed as having dementia internationally, Pearson argues. But this is to ignore the considerable harm and distress in labelling someone as having a dementia diagnosis when he or she doesn’t.

But the subsequent statistics from Pearson are meritorious. A third of home in care homes are receiving antipsychotics, even when inappropriately prescribed. A third of people with dementia who go into hospital come out with reduced functional ability.

The statistics on poor quality care do indeed reflect the general picture reported in England from the Care Quality Commission.

OECD and WHO have been formulating a framework for dementia care across countries, providing a way of measuring good care and measuring progress.  This framework describes building action on strengthening domestic systems of health and social care. This is particularly pertinent in England where social care has been progressively cut in the last few years. Secondly, Pearson outlined the need to develop good policies; thirdly to measure progress.

10 different stages were then presented.

They move from risk reduction to delivery of diagnosis, to early stages, to support in the communities, the possible transfer to an institution, and finally end of life and palliative care; cross cutting issues including the intelligent use of technology.

Pearson then described the rôle of people in dementia care; the need to focus on personal interactions, a key factor in determining the quality of life.

“We do need to support the people who do the support.” Counselling, training, respite need to be targeted for carers; including low prestige and poor employment conditions. I personally am hoping that Andy Burnham MP can forge ahead with this in beefing up training of the workforce, as well as producing some rights for caregivers in the NHS Constitution.

Pearson also outlined the need for care coordination, between health and social care systems. There need to be better data sharing, electronic patient records, better coordination, for example, Pearson argues; and I could not agree more. Progress will be made in England, I believe, through whole person care.

Pearson emphasised the need to measure the quality of care, as a benchmarking of performance across different providers, in different countries; to measure policies, activities, and outcomes, systematically, as Pearson argues, for people living with dementia and caregivers.

The new OECD report can be found here.

Rosa did a much needed introduction to the importance of human rights.

ROSA

Rosa introduced ‘PANEL’ – for the need for all stakeholders to consider in policy (e.g. as for Scotland).

PANEL

People with dementia should be able to enjoy their rights and freedoms, to ensure dignity and privacy.

 

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Dementia friendly communities and 'the Big Society' – my pledge for #NHSChangeDay

If you trawl back ‘through the archives’, it is quite constructive to chart the origins of ‘the Big Society’. Often seen as the policy turkey which never flew, it was the idea that communities could produce measurable outcomes for the benefit of society through voluntary action.

The “Big Society” has had more policy relaunches than either David Cameron nor the Cabinet Policy would like to remember, but many feel it has never been officially laid to rest.

‘Dementia Friends’ saw a multi-million pound initiative, involving the Alzheimer’s Society, for providing information sessions to members of the public. It is in many ways an illustration of the Big Society; and in this particular case, ‘Dementia Friends’ aims to tackle ignorance and prejudice leading to stigma and discrimination. This is indeed a worthy cause.

I myself am a @DementiaFriends ‘champion’, and very proud of it.

“Dementia Friendly Communities” has been a policy construct which has been very popular amongst the Big Charities globally, including the Alzheimer’s Society and Alzheimer’s Australia. Like neoliberalism, globalism by definition knows no territorial bounds; and nor does this policy apparently.

David Willetts MP, often affectionately called “Two Brains” by both fans and political enemies, is known to be an intellectual power house of the Conservative Party. He is thought to have been the “brains” behind much of the private finance initiative thinking of the early 1980s in a policy document for the Social Market Foundation.

In 1994, he proposed a notion of ‘civic conservatism’. It is picked up here in an interview with Caroline Crampton, now of the New Statesman:

“He considers for a long moment, then says: “What does frustrate me is that, in the long years of opposition, it took a long time for the Conservative Party to get to grips with some of this stuff. I think we have now. If you look at the social action projects that the members of the new intake have done, their commitment to their constituencies, their understanding of the importance of the voluntary sector, we’ve made great progress. In politics, you have to be patient.” All the evidence suggests that Willetts is going to have to continue to be patient; there is no guarantee at this stage that his party will win a majority at the next general election, or that, even if it does, his highly intellectual approach to his brief will have delivered enough substantive change to justify his promotion ahead of others.”

The “dementia friendly communities” policy can be served up in whichever way you wish. You can argue it as a perfect vehicle to give the commercial market a slight ‘nudge’, so that ‘dementia friendly’ providers gain competitive advantage by being ‘dementia friendly’. This would benefit both customers and employers, conceivably. It makes sense of the motherhood and apple pie thinking behind providing ‘Dementia Friends’ sessions for the top FTSE100 countries, inter alia, in the current Dementia 2020 policy document (aka ‘The Prime Minister’s Dementia Vision’).

At the other policy end, it is impossible to argue against inclusivity and accessibility. It is impossible for someone like me who is a card-carrying evangelist for personhood to deny that relationships underlie what it is to be a person. Such relationships, often articulated in the hyper cerebral world of ‘relational ethics’, foster solidarity and justice as suggested here.

It is, however, politically interesting why the Big Society has been such a political turkey which never flew. One of the most toxic arguments against it was that it was in fact a cover for cuts. And, despite the Prime Minister’s hyperbolic claim that he wants the UK to be ‘the best place in the world to have dementia’, social care funding is on its knees. I indeed argued this as the King’s Fund when I was kindly asked to appear in their panel session.

on its knees

The rub is social care has not been ringfenced since 2010. It is quite impossible to consider the health and care systems to be divorced from one another, especially when you consider, for example, that cuts in social funding have been directly responsible for delayed discharges from acute hospital care into the community for NHS patients, including frail elderly people living with dementia. That’s what many of us mean by ‘breaking down silos’, for those of us with experience of acute medicine, albeit a long time ago.

“Dementia Friends”, although meritorious, poses a particular problem for people like me who are prone to conspiracy theories. It is, despite its good intention, an elaborate cover for cuts.

Whilst community action is undoubtedly a worthy policy construct for supporting people with all mental health issues, as indeed WISH some years argued, “Transforming lives – enhancing communities“, together with historic initiatives such as WHO ‘age-friendly cities‘, it is one approach. The other approach is to promote the autonomy, dignity and human rights of people living with dementia themselves.

This approach is firmly footed in equality rights and human rights, and in a way is a form of disability activism.  This is not altogether surprising, as I am physically disabled, and dementia is indeed referred to in the guidance for a qualifying condition regarding discrimination in the Equality Act (2010), legislated for by a previous government.

And you will have noticed one thing about a dystopic dementia friendly community, one in which the State is rolled back. Sure, for a dementia friendly community to work, it is perfectly possible to outsource social determinants of health including housing and transport. But likewise, it can be argued that a neoliberal concept of dementia friendly communities, as may or may not be promoted by Big Charity, does not particularly care about access to high quality specialist nursing (such as Admiral nurses) or access to high street justice (such as legal aid cuts and the recently legislated Legal Aid and Sentencing and Punishment of Offenders Act 2012).

But, looking on the bright side, promotion of individual rights is also very much at the heart of independent living (and de-institutionalisation which has been the scourge of mental health policy in England for many decades).

In particular, I should like to commend to you @DementiaBoy, Andy Tysoe, a dementia nurse specialist at the Countess of Chester Hospital, for his important work today for @NHSChangeDay.

So here’s my official NHS pledge: not to allow dementia friendly communities to be a cover for cuts, while supporting the overriding principles of inclusivity, accessibility, solidarity and justice, and “rolling back the State”, but to promote, simultaneously, legal enforceable rights of people with dementia in equality and human rights as legislated for currently in England.

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