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My personal experience of an introductory day to ‘Dementia Friends’ Champions
OK it’s not heaven on earth – but Kentish Town London does have some merits I suppose.
To say that I am passionate about the dementia policy in England is an understatement.
Throwing forward, I believe living well with dementia is a crucial policy plank (here’s my article in ‘ETHOS journal’), for which service provision needs a turbo boost through innovation (here’s my article co-written in Health Services Journal).
“Dementia Friends” in reality means rocking up in a venue somewhere near you for about 45 minutes to learn something about the dementias.
Once you sign up on their website, the experience is also backed up by an useful non-public website containing details of training, pre-training materials, and help on how to promote sessions. You can also provide on that website precise details of any ‘Dementia Friends’ information sessions that you run in due course.
I had known of this initiative mainly through Twitter, where I am very active. I find the twitter thread of @DementiaFriends interesting.
Even I’ve been known to get involved in a bit of mass hysteria myself:
I possibly signed up despite of the substantial interest in the media and social media, what psychoanalysts might call an “abreaction”. There’s a large part of me which feels that I do not need 45 minutes on dementia, having studied it for my much of my final undergraduate year at Cambridge, done my Ph.D., written papers such as this (one of which even appears in the current chapter on dementia in the Oxford Textbook of Medicine), written book chapters on it (which as this one which appears in a well known book on younger onset dementia), and even written a book on living well with dementia.
But Prof Alistair Burns is a Dementia Friend – and he’s the clinical lead for dementia in England.
I went out of curiosity to see how Public Health England had joined forces with the Alzheimer’s Society. I must admit that I am intensely loyal to the whole third sector for dementias, including other charities such as the Joseph Rowntree Foundation, Young Dementia UK, Alzheimer’s BRACE, and Dementia UK.
I have my own particular agendas, such as a proper care system for England, with the provision of specialist nurses such as Admiral Nurses. I think some of the English policy is intensely complicated, best reserved for those who know what they’re talking about – especially people currently living with dementia and all carers including unpaid caregivers.
I personally think the name ‘dementia friendly communities‘ is ill conceived, but the ethos of having inclusive communities, well designed environments and ways of making life easier for people with certain thinking problems (such as memory aids, good signage) highly attractive. It would be unfair in my view for this construct to be engulfed in cynicism, when the fundamental idea is likely to be a meritorious one.
But I don’t think Dementia Friends competes with any of that, and one must be mindful of the gap society had of awareness of dementia.
This gap is still enormous.
And the aim is for people – not just Pharma – to be interested in dementia. These are real people with their own lives, not merely ‘potential subjects for drug trials’ (worthy that the cause of finding an effective symptomatic treatment or even cure might be potentially). But these are people living in the now – take for example the Dementia Alliance International, persons with dementia with beliefs, concerns and expectations of their own like the rest of us.
Only at London Olympia at the “Alzheimer’s Show” [and it is very well I am not a fan of such events which I have previously called "trade shows"], the other week, I presented at London Olympia for my ‘Meet the author session’, arranged on the kind invitation of various people to whom I remain very grateful.
At “The Alzheimer’s Show”, I met within the space of ten minutes a lady newly diagnosed with vascular dementia who did not intend to tell anyone of her diagnosis, and one person married to someone with probable dementia of the Alzheimer type who did not even tell his friends for three years.
It’s a rather badly articulated slogan but the saying ‘no decision made about me without me’ I think is particularly important for dementia.
These are two real (without warning) discussion points from the floor.
“Are people with dementia actually involved with any of the sessions?”
Yes: in fact my pal Chris Roberts (@mason4233) in Wales delivers his Dementia Friends sessions word-perfect for 45 minutes, without telling his audience that he himself lives well with dementia until the very end. Chris tells me this dispels, visibly, preconceived prejudices from his audience members. Chris blogs regularly on his blog, and has written for the ‘Dementia Friends’ blog.
“Why should people with dementia be given special elevated status compared to any other medical condition?”
It’s a difficult one. Some people believe that with dementias people will easily ‘snap out of it’ ‘if they pull themselves together’. This is completely at odds with one of the learning points that dementia is chronic and progressive. And of course people in the real world – viz CCG commissioners – have to decide how much they wish to prioritise dementia ahead of, instead of, etc. other medical conditions such as schizophrenia. But people living with dementia can present with known problems such as forgetting their pin number, and therefore it’s not actually a case about giving people with dementia an ‘elevated status’, but getting them up as individuals to be expected from anyone. Although it’s motherhood and apple pie, it’s very difficult to find, whatever the motive, the intention of dementia friendly high street banking fundamentally objectionable.
Dementia Friends Champions become rehearsed in the programme at one-day sessions across England. What happens is that you watch videos on their website, sign up for a day (where you get to take part in a Dementia Friends session) and then attend the session somewhere close to where you live habitually.
The sessions are run all over England at regular frequency. You sign up for a session, then you get an email quickly afterwards. You go to the meeting.
My meeting started on time. I am physically disabled, so I was grateful for easy access to the venue in Voluntary Action Camden (I could use the lift).
One of the things some of us mean-minded people pick holes in is whether the venue itself might be dementia-friendly. TICK.
I thought so.
The group dynamics worked really well.
My group consisted of interesting people, all ‘realistic’ in their expectations of shifting the Titanic of messaging of negative memes in the media. Many of my group were particularly interested in social equity, fairness and justice, reading between the lines.
I particularly enjoyed speaking with one delegate who is a NHS consultant in psychiatry. We went through pleasant niceties of what he was examined on in his professional membership exams (in his case the difference between schizophrenia and drug-induced psychosis). But he was great to chat to during the day.
I bored him to death with my example of persons with dementia putting numerous teaspoons of sugar in their cups of tea, on rare occasions, due to ‘utilisation behaviour’, a particular predilection for sweet foods since the onset of dementia, or cognitive estimates problem, a very niche area of cognitive neuropsychology for both of us. But this was simply in an activity on making tea where such private chit-chat was irrelevant; the actual session as delivered, on how to make a cup of tea, was far superior than the two hour version I did in a workshop for my MBA in that well known method known to managers: “process mapping“.
The whole day was presented by Hannah Piekarski (@HannahPiekarski), Regional Volunteering Support Officer for the London and South East region for “Dementia Friends.
I’ve sat through more presentations than you’ve had hot dinners, but the standard of the presentation was excellent. Although the presenter clearly had a corpus of statements to make, the presentation was not contrived at all, and the audience had plenty of opportunity to ask questions at points during the day. The presenter evidently knew what she was doing, and was a very good representative of the Dementia Friends programme. She gave her own ‘Dementia Friends’ session which the group of about twenty found faultless.
Hannah even ran a session after the lunch break on what makes a BAD presentation.
Here are my scrappy notes which I took – and please don’t take this to be representative of the actual discussion of what makes a bad presentation which we had in our group.
I SO wish some of my lecturers (including Readers and Professors) had been to Hannah’s session on generic skills in presentations. Whatever you do after ‘Dementia Friends Champions’ day, there’s no doubt that such a session is really useful across various sectors including law and medicine.
You don’t really have to take notes as it’s all fundamentally in their well laid out handbook.
The day was run with the purpose of not giving you tedious crap on how to run a session. But it was furnished with many useful pointers. For example, I learnt of possible venues such as a local library, church halls, and community centres.
Actually, I have in mind to ask Shahban Aziz, CEO of BPP Students, Prof Peter Crisp (Professor of Law at BPP Law School) and Prof Carl Lygo (also Professor of Law at BPP Law School) whether I might run dementia friend sessions at this law school which I attended for my pre-solicitor training. I’ve always had a bit of a discomfort that lawyers are not really given any introduction to dealing with people with dementia, other than professional regulatory considerations or in direct dealings with the law such as mental capacity? I think it’d be great if law students had a basic working knowledge of what dementias are.
It was nice for me to get out of my flat, and meet a range of people. These people ranged from other people in the third sector, for example the Dementia Action Alliance. They bothered to provide free coffee all day, and a free lunch.
And when I tweeted that on my @legalaware Twitter account from my mobile phone in the lunch break (you’re told to turn your mobiles off for the day), I received this smartarse (#lol) remark from one of my 12000 followers immediately.
You’re given a guidebook. You’re not coerced in any way into becoming a Dementia Friend or Dementia Friend Champion. You’re told specifically having done Dementia Friends you can do whatever point of action you wish, even if that includes supporting another charity other than the Alzheimer’s Society.
You are told that the point of the current dementia strategy in England in no way is intended to be political. In support of that claim is that the current strategy has overwhelming cross-party support.
The sessions include information about dementia and how it affects people, as well as the practical things that can be done to help people with dementia live well in their community.
I was given resources to answer people’s questions about dementia and suggest sources of further information and support.
After completing the course Dementia Friends Champions can access resources and tools to help set up and run sessions for people who sign up as Dementia Friends.
These resources include exercises, quiz sheets, bingo sheets, book club ideas and reading suggestions. You’re made very familiar with the content of ‘Dementia Friends’ as they helpfully provide ALL the material on the website when you sign up. They don’t hold any of it back. The point is you go away and run the whole session as ‘Dementia Friends’. Having seen how the 45 minutes works, I have no burning desire to change any of it.
Having said that, there are one or two things I would do differently, hypothetically. The format makes it very clear the presenter is not an expert in dementia or counsellor. I think this actually helps in that an expert possibly could write an hour long essay on each of the five statements for finals, and get truly bogged down in “paralysis by analysis”.
One of the possible features of the ‘Dementia Friends’ session is comparing dementia to a bookcase. This is a well described metaphor, first proposed by Gemma Jones. I have indeed used it to propose a scheme of explaining ‘sporting memories’, an initiative which recently won the Alzheimer’s Society Dementia Friendly Communities national initiatives awards.
Here’s my pal Tony Jameson-Allen picking up his gong.
There’s a bit in the explanation of the bookcase analogy that gets quite technical in fact.
With the presenter of the session having said that he or she is not an expert in dementia or counsellor, it seems counter-intuitive to me that there is an explanation of the organisation of memory using two highly technical locations in the brain, the hippocampus and amygdala. But things like that are not a ‘deal maker’ or ‘deal breaker’ for me. There’s an excellent video of a presentation of the bookcase analogy by Natalie Rodriguez floating around, in fact, but we were all encouraged to be explain the analogy ‘live’ in our sessions, ‘rather than playing the DVD’.
I have absolutely no problem with the material being pre-scripted. I used to supervise neuroscience and experimental psychology for various colleges at Cambridge between 1997 and 2000 inclusive, and, whilst the guidance for teaching that was not as intense, it’s fair for me to mention that supervisors knew exactly what they had to cover for their students to achieve at least an upper second in finals.
Dementia Friends Champions, like me, are then be encouraged to run Dementia Friends sessions at lunch clubs, educational institutions and other community groups, but it could also include ideas such as arranging a meeting to talk with a small group of friends.
I intend to run five sessions to achieve about 100 further dementia friends. I conceptually find targets anywhere quite odious, and see exactly where this ambition has come from (Japan). On the other hand, nobody is a clairvoyant. The fact the number exists at all (aiming for March 2015) is a testament that this programme is being taken seriously. Had the number been set at 400, then we would all have said ‘job done’ some time ago.
I am actually, rather, amazed that somebody somewhere has signed off for a national programme to invite ordinary members of the public to attend free of charge a day on delivering the Dementia Friends programme, with nice company, and of course that free coffee and lunch.
I am also amazed that the actual substrate of the information sessions for ‘Dementia Friends’ is being offered to the member of the public free of charge, and it effectively has been paid for by Government.
The operational delivery of ‘Dementia Friends Champions’ day was totally faultless from start to finish. Even though I have nothing to do with their output, the Alzheimer’s Society here in England have done a brilliant job with it.
And finally I’ve tended to query whether it can be a genuine ‘social movement’ which so much resource allocation.
But people are genuinely interested in the programme, as these tweets to me demonstrate, I feel:
Look.
There are all sorts of things which do irritate me such as the issue that any dementia awareness should observe boundaries. For example, there are also many global ‘Purple Angels’ motivated by the leadership of Norman McNamara (@norrms), himself living with dementia of diffuse Lewy Body Type.
Here’s their brand new website. Norman is a very good friend of mine, so I’m bound to be loyal to him.
In a different jurisdiction – Australia – a close friend of mine, Kate Swaffer (@KateSwaffer), blogs daily on her busy life living with dementia, which includes being an advocate, travelling, cuisine (Kate is very experienced in sophisticated cooking), a background in healthcare, a student at the University of Wollongong, and what’s it like to live with dementia after being given the diagnosis. Her blog is here.
Chris, Norrms and Kate are all quite different – like the rest of the population – getting on with their lives. And as the very famous adage goes, once you’ve met one person living with dementia, you’ve done exactly done. You’ve met only one person with dementia.
And there’s clearly a huge amount to be done. Also at the Alzheimer Show one carer reported a person with dementia being ‘lost to the system’, completely unknown to anyone for care for three years.
I had a huge volume of concerns about this initiative, and I’m no pushover as far as being ‘in with the in-gang’ is concerned. But I strongly recommend you park your misgivings and go there wanting to be a part of a “change”.
I went on the day after the passing away of the incredible Dr Maya Angelou.
As she said, “If you don’t like something, change it. If you can’t change it, change your attitude.”
If you’re an unpleasant person, a week of ‘dementia awareness’ will make no difference
There’ll be a third of people roughly who’ll hate whatever you do.
There’ll be a third of people roughly who’ll love whatever you do.
There’ll be a third of people roughly who’ll be completely indifferent.
This is advice my father gave to me shortly before he died. In society, there will always be a hardcore group of selfish bastards.
Many people who develop long term conditions in adulthood report how people whom they had considered ‘friends’ suddenly desert them.
They say ‘sayonara’ when times get tough. They are not there for you when it matters.
Sadly, in the real world, with all the best will in the world from policy-makers, there will very many people for whom this becomes an extremely negative experience on receiving a diagnosis of dementia from a clinician.
The shock of receiving that diagnosis can be profound, leading almost for the recipient of the diagnosis to enter the first stage of the Kubler-Ross ‘five stages of grief': denial.
And of course doctors can come to the wrong conclusions especially if the information is slightly incorrect: so in an ideal world, every first diagnosis would be confirmed through a specialist look at the supporting evidence including perhaps further tests.
There has never been a definitive statement that there has been a concomitant increase in resources for services for specialist dementia services for this national policy in increasing dementia diagnostic rates. This is one issue which the All Party Parliamentary Group for dementia under The Baroness Greengross should examine urgently, I feel.
Unfortunately, if ‘friends’ of yours suddenly leave you in droves, you will end up lonely, even if you yourself are a pleasant person.
“I have never felt so lonely” is a very common saying to hear a person living well with dementia saying, even in this age of ‘Dementia Friends’.
So, there’s the rub, schemes such as ‘Dementia Friends’ will make certain people collect a badge for making themselves feel better about having done something superficially for dementia, and think ‘job done’.
But it’s the action which follows which matters. This might include contributing to a dementia charity, with a very small proportion of revenue ultimately going towards research into living well with dementia.
The original Japanese ‘befriending’ scheme meant exactly that. The aim was to ‘befriend’ a person living with dementia, to break down the usual taboos.
So it is not altogether surprising that, if society still shows stigma and discrimination towards people living with dementia, there are some people who might recognise symptoms but prefer to keep schtum.
Keeping schtum might be delaying to see the Doctor, or delaying doing something about the diagnosis, such as having it confirmed elsewhere or telling close friends about it.
In the cost-benefit analysis, telling people about the diagnosis might be accompanied about fears of losing your driving licence (as indeed a person from South London living with vascular dementia told me three days ago at the Alzheimer’s Show). Or it could be accompanied by fears about job prospects. Or it could be accompanied by fears shopping or using a bank.
Whilst I disagree with the name, you can sympathise with the general good intentions of ‘dementia friendly communities’. And perhaps award ceremonies which celebrate good practice, if they break down discrimination and stigma, might help.
Seeing people living well with dementia might help turn around negative perceptions of certain people. This might include Norman McNamara’s infectious ‘Run for the Sun’, the winner in the 2014 Riviera Fringe Festival Anthem Competition. Or it could include Sir Terry Pratchett continuing to produce successful books whilst living with a diagnosis of a type of dementia called posterior cortical atrophy.
But one is immediately cautious about embarking on a route where people living with dementia need to prove they are successful to prove their worth. This is reminiscent of some people from ethnic minorities who had to prove themselves academically and professionally to be accepted. At one extreme, for example, should be welcoming immigrants into this country only if they can contribute something economically to this country? Nigel Farage has often spoken about the engineer from New Zealand being discriminated against compared to perhaps an artisan from a country such as Latvia.
But it is clearly going to be difficult to change direction of a huge ocean liner. One week’s ‘Dementia Awareness’ is necessary but insufficient, possibly. People’s basic knowledge about dementia could be improved with some basic facts – e.g. that it is not part of normal ageing, many people live well with dementia, dementia is not just about memory – as per the ‘Dementia Friends’ campaign from Public Health England delivered by the Alzheimer’s Society.
However, people with dementia often report that they need to be given time and for others to be patient from both professionals and non-professionals. People with dementia often report being rushed in settings ranging from supermarket aisles to acute hospitals. Such a sentiment of feeling rushed more often than not gets tagged onto a feeling of being a burden, and can become profoundly depressing.
When professional shills for raising money into dementia get accompanied by ‘cost’ rather than ‘value’, and when public perception of some in society about people living with dementia can be low, the situation can get worse rather than better.
When we use terms such as ‘dementia friendly communities’, it can engender a feeling of ‘them against us’, and people with dementia become ‘somebody else’s problem’.
Of course, many people are not so pathetic, and such negative generalisations may not be justified with recent successes in raising awareness such as G8dementia or ‘Dementia Friends’.
But we do need to worry as a society if things have not fundamentally changed as a society in perception and identity of people living with dementia. Some people still refuse steadfastly to believe there are some people living well with dementia. It could be the case that people actively avoid talking about the ‘D’ word in much the same way they once avoided the ‘C’ word, and this is reflected in the comparative lack of funds raised for dementia and cancer respectively.
‘Dementia Awareness Week’ is running here from 18-24 May 2012.
If one more person can become a bit more understanding about living with dementia, there are plenty of reasons to be cheerful?
Please support us on Facebook this week.
Deep breaths..
The man who coined the term 'Bedroom tax' is an expert in housing, and a Crossbench peer
There are reasons why the “bedroom tax” is so unpopular. It has all the right ingredients. It affects families that garner popular sympathy: foster parents, military families, and people caring for their disabled or terminally ill husbands and wives. This is not “un-deserving poor” material. Furthermore, losing a bedroom is a highly visible, concrete sacrifice with is relatively easy for the media to understand, compared to, for example, the NHS reforms; and certainly much easier than trying to illustrate the impact of benefits uprating. It even has a snappy name – the ‘bedroom tax’ – perfect for a twitter hashtag and one which resonates with connotations of the poll tax, granny tax and pasty tax.
Virtually every week, David Cameron makes fun of Ed Miliband and Labour for arguing that the “bedroom tax” is not in fact a tax. Yesterday’s pre-scripted jibe was typical of so many feeble attempts to discuss this important societal issue coherently, as follows:
“Let us be absolutely clear that this is not a tax. Let me explain to the Labour party that a tax is when someone earns some money and the Government take some of that money away from them—that is a tax. Only Labour could call a benefit reform a tax increase. Let me be clear to the hon. Gentleman: pensioners are exempt, people with severely disabled children are exempt and people who need round-the-clock care are exempt. Those categories of people are all exempt, but there is a basic issue of fairness. How can it be fair that people on housing benefit in private rented accommodation do not get a spare room subsidy, whereas people in social housing do? That is not fair and we are putting that right.”
Lord Richard Best was one of the first high profile figures to use the phrase when the Welfare Reform Bill was going through parliament towards the end of 2011. However, Lord Best, speaking yesterday at the Chartered Institute of Housing south east conference in Brighton, said: ‘I coined this phrase bedroom tax because this is a tax.
‘I have been much criticised for using this phrase, but if you have to pay a sum of money and you cant escape from doing so, and that sum of money goes to the government – it looks to me all very much like having a tax.’
Lord Best said housing associations need to make the point to government that the bedroom tax will reduce their income. He said:
‘The thing that will chime with government is that it will lessen your ability to build more homes and the government really does believe we need to do that.’
And here’s the rub. Lord Best is actually an expert in housing, and a Crossbench peer. His Wikipedia entry is as follows:
David Cameron made a couple of glaring errors about the tax yesterday, summarised in C4 FactCheck:
““People with severely disabled children are exempt.”
No. There’s no automatic exemption for disabled children. In fact, not only is the government not making this blanket exception, it is actually fighting a legal challenge on the point from 10 disabled children who argue that the rule changes amount to discrimination. Under the new rules, the full benefit will only be paid if under-16s of the same sex share a room, and under-10s will have to share regardless of gender. And the expectation is that this will apply to disabled youngsters too. But local councils will have the discretion to waive the cut in regard to some disabled households. And there is a £30m hardship fund, the money targeted at preventing people whose homes have been adapted to help them cope with disability from being forced to move. We don’t have much more detail on exactly what guidance has been issued to local authorities on who they spare from the cut, or how many disabled children are likely to be affected. And the £30m has to be seen in the context of the total benefits cut disabled people are expected to take. According to government impact assessments, 420,000 of the 660,000 people affected by the changes are disabled, and they will lose an average of £14 a week. That’s just under £306m a year.
So there is some money available and councils are expected to use some discretion, perhaps mitigating the impact for the most severely disabled, but there is no “exemption” for disabled children overall.
“People who need round-the-clock care are exempt.”
Wrong again. DWP has said that an extra bedroom is allowed if a disabled person has a live-in or overnight carer. But that doesn’t apply if the carer is also your partner or spouse. If you are disabled and your wife is also your full-time carer, but needs to sleep in a different room, you will still face a benefit cut. Again, you could be eligible for money from the hardship fund, but that doesn’t amount to an exemption to everyone who needs 24-hour care.”
Indeed, a high court judge has given Iain Duncan-Smith days to show why there should not be a judicial review of the government’s “spare bedroom tax”, amid concerns that disabled people will be disproportionately affected by the change in benefit rules. This legal challenge against the benefit reduction had been launched against Iain Duncan Smith on behalf of ten disabled and vulnerable children. The claimants were hoping for a judicial review to take place before the tax comes into effect on 1 April but in the high court on Tuesday, Mr Justice Mitting said that was too short a timescale. However, he indicated that if, after hearing the Department for Work and Pensions’ grounds against the challenge, he was satisfied that the judicial review should go ahead, a full hearing could take place in early May.
Conclusion: the Government’s answers may fool some of the legislature, but, most importantly, they do not fool many in the public, and are unlikely to fool the judiciary.
Is the attack on the disabled necessary and proportionate? The response should be a legal one.
Most of us know by now that welfare benefits is out-of-scope in #LASPO. This concomitant loss of funding for legal aid work may mean that CABx and legal centres shutting in the context of a problematic finding. This is particularly ludicrous given that as many as a third of people claiming incapacity benefits who are declared fit-for-work later may go on to win appeals against the decision.
Nikki Neufeld, of the Pembrokeshire Citizens Advice Bureau, said that nationally, in new Employment and Support Allowance claims that 41% of all fit for work decisions have been appealed against and, of the appeals heard between December 2010 and November 2011, 32% were successful.
The Disability Living Allowance (DLA) is being replaced by the Personal Independence Payment (Pip) next year. Approximately two million DLA claimants are to be reassessed as part of the change—and as many as 500,000 will be denied the new benefit. The Coalition Government hopes to cut at least 20 percent, almost £2.2 billion annually, off the bill.
There is now an overwhelming case file of perplexing examples of decisions made lawfully. For example, Paul Mickleburgh, 53, has undergone a series of operations over the past 33 years, including four failed transplants, and has suffered 14 heart attacks. The father-of-three says he is the victim of changes which involve transferring tens of thousands of Scots claimants off incapacity benefit or severe disablement allowance and on to the new Employment and Support Allowance (ESA). He criticised the Government after being told to attend work-focused interviews and actively look for employment or face a cut in benefits.
In September 2010, Jan Morgan had a brain haemorrhage, which caused a severe stroke that left her cognitively and visually impaired, doubly incontinent and totally paralysed on her left side (in her own words). The prognosis was that she would need 24/7 care for the rest of my life. She was 50 and her youngest child was aged just 12 years. Astonishingly she “was politely informed that [her] benefit had been stopped as [her] medical certificate had expired.” Also, an online petition has been raising the awareness of cutting of benefits opposing plans by the Department for Work and Pensions, which could lead to the blind and partially-sighted being denied existing benefits. One recipient said, “I have more than 36,000 signatures, which have come from disabled people and those from all walks of life. They include the chief executives of large organisations, to those who just care about welfare reforms being totally unjust.” Indeed, a CWMCARN man who was declared fit to work despite being registered blind and suffering from rheumatoid arthritis is appealing against the decision.
Even veterans are not safe, it seems. Officials have estimated that a total of 500,000 people will lose disability benefits under Mr Duncan Smith’s plan for a “more focussed” allowance called the Personal Independence Payment available only to those in “genuine need” of support. In a formal submission to the Department of Work and Pensions’ consultation on the reforms, the Royal British Legion apparently has warned that the criteria that could be applied to the new benefit could hit limbless ex-Servicemen especially hard.
The social media have been a Godsend for many disabled citizens. Sue Marsh has been relentlessly raising awareness of the issues she has been facing on her ‘Diary of a Benefit Scrounger’ blog, and Kaliya Franklin was recently nominated for the shortlist of the Orwell Prize 2012 for her blog “Benefit Scrounging Scum”. The impact of the Coalition, felt by many disabled citizens, is now finally being recognised in the wider media. For example, Jess Thom writes:
“Disabled people are right to feel like the hardest hit by the coalition’s relentless cuts. On the national level there’s the planned abolition of disability living allowance – a move designed to make 500,000 disabled people ineligible for basic support – or the health bill, which will privatise the NHS by the back door and make it harder for disabled people to access the services they need. And the brutal cuts continue at a local level affecting countless crucial frontline services.”
Any law in the UK has to be proportionate, and there is a European legal doctrine of proportionality which oversees this. The concerns about the disability benefit legislation, as regards human rights, are well documented (see for example a previous article on this blog). The European doctrine of proportionality means that, ‘an official measure must not have any greater effect on private interests than is necessary for the attainment of its objective’:Konninlijke Scholton-Honig v Hoofproduktchap voor Akkerbouwprodukten [1978] ECR 1991, 2003.
Proportionality is probably not a ground for review separate from judicial review, but when a decision is challenged by judicial review the new approach required under the HRA was described by Lord Steyn in R (Daly) v The Secretary of State for the Home Department [2001] 2 AC 532, paragraphs 25 – 28. Exactly how the courts should approach issues of proportionality was discussed by Lord Steyn in the case of R (Daly) v SSHD [2001] 2 WLR 1622, in which he said at paragraph 27:
The contours of the principle of proportionality are familiar. In de Freitas v Permanent Secretary of Ministry of Agriculture, Fisheries, Lands and Housing [1999] 1 AC 69 the Privy Council adopted a three stage test. Lord Clyde observed, at p 80, that in determining whether a limitation (by an act, rule or decision) is arbitrary or excessive the court should ask itself:
“whether: (i) the legislative objective is sufficiently important to justify limiting a fundamental right; (ii) the measures designed to meet the legislative objective are rationally connected to it; and (iii) the means used to impair the right or freedom are no more than is necessary to accomplish the objective.”
The response to the attack on the disabled should not just be a moral one, then. The response should be a legal one.
"Responsible reform": Sharp criticism of the legitimacy of welfare reforms from international and domestic law
Embargoed for publication 10:00 9 January 2012
A new Report on the proposed changes to Disability Living Allowance in a team led by Dr S J Campbell, Sue Marsh, Kaliya Franklin and Declan Gaffney, raises fresh concerns about the legitimacy of the new welfare reforms for England and Wales. This Report provides much hope to disabled law students, as the Report paves the way for a comprehensive legal challenge to the Welfare Reform Bill for alleged breaches of international and domestic law, especially as regards discrimination, human rights and equality.
Introduction
The new Report cites specific examples of existing concerns about the legitimacy of such reforms under international and domestic law, but the clarity of new precise statistics. At present, the rights of disabled citizens are protected by a range of domestic and international legislation, including the Universal Declaration of Human Rights, the International Covenant on Economic Social and Cultural Rights (ICESCR), the UN Enable Convention on the rights of people with disabilities, Articles 28, 26 & 4 (UNCRPD), Disability Discrimination Act 1995, the Human Rights Act 1998, and the Equality Act 2010. Under Equality Act 2010, it is illegal to treat one group of disabled people less favourably than another. If removal of DLA from people with so-called “lesser needs” removes or limits those choices, the UK Government may find itself in breach of their human rights obligations.
The Report provides troublesome reading for the Government regarding their “equality assessment”:
The Government Equality Assessment recognises that some disabled people will lose their entitlement to DLA. We dispute the Government’s claim that losing DLA will increase disabled people moving into work. We suggest the opposite. During the consultation many disabled people reported that losing their DLA would leave them unable to continue working, most often citing travel costs. !is misunderstanding underlines the Government’s deep misconception of DLA as an out-of-work benefit rather than a benefit which enables work for those disabled people who are capable of it.
This Report was entirely written, researched, funded, and supported by sick and disabled people, their friends and carers, as well as thousands more supported it through social media. It is report is a comprehensive presentation of the most relevant evidence available on Disability Living Allowance (DLA) and the proposals to replace it with a new bene?t, Personal Independence Payments (PIP). It gathers together existing information and analyses over 500 group responses to the Government’s Response to Disability Living Allowance reform (obtained under FOI request 1989). That the Report was so comprehensively produced with the relative lack of funds normally given for such exercises is a touching testament to the commitment of people genuinely distressed about this.
The Report’s authors argue that “reform must be measured, responsible and transparent, based on available evidence and designed with disabled people at the very heart of decision-making“. The authors unfortunately concluded that there was a clear indication that this had not been the case, and respondents to this particular consultation repeatedly warn that plans for PIP may be in breach of some or all of these. Overwhelmingly, they found that disabled people do not agree that there is a need for an entirely new bene?t. It was clear to them that whilst disabled people do support some reform of DLA they do not want an altogether new bene?t. The respondents believed it is a costly irrelevance during times of austerity. However, the Report provided that, “Disabled people are clear and emphatic – keep DLA and reform the existing bene?t.”
Mental illness
The Report finds that:
It was felt that people with mental health disabilities would be disproportionally affected by these proposals. This was deemed to be because they would suffer from the type of assessment proposed which would perform poorly at assessing fluctuating conditions, so called invisible disabilities, people with poor communication skills and people who might be unable to communicate changes of circumstances, all of which apply in particular to people with mental health disabilities. Furthermore people with mental health disabilities are disproportionally represented among those receiving lower rate DLA and are considered to be the most likely to suffer from any cuts.
Wellbeing
The Report finds that:
Ironically it was felt that disabled people would be negatively affected by these proposals. Due to cuts of 20% there would be a significant loss of income to large numbers of disabled people who would lose valuable support. It was also reported that some might be unable to continue working and others would be unable to continue socialising. It was felt that there could also be a negative impact on their health and wellbeing. It was suggested that there might be a contravention of human rights in these proposals.
Crucially, this Report puts another nail in the coffin for the proposed argument that the the proposed Welfare Reform Bill is consistent with other sources of domestic and international law. This has already begun to be an area of close scrutiny.
Extracts from other recent documents are provided below.
Legislative Scrutiny: Welfare Reform Bill – Human Rights Joint Committee
The Welfare Reform Bill was introduced in the House of Commons on 16 February 2011 and was brought from the House of Commons to the House of Lords on 16 June 2011. The Parliamentary Under-Secretary of State and Minister for Welfare Reform, Lord Freud, has certified that, in his view, the Bill is compatible with Convention rights. The Bill completed its Committee stage in the House of Lords on 28 November and its Report stage is scheduled for 12 December.
THE LEGAL STATUS OF THE RELEVANT STANDARDS
1.21 Before considering the specific provisions of those treaties which are relevant, we think it is important to point out the different nature of the legal obligations imposed on the State by the European Convention on Human Rights on the one hand, and by human rights treaties such as the ICESCR[12] and the UNCRC on the other.
1.22 All human rights treaties impose legal obligations, but the precise nature of those obligations differs. ECHR rights are the archetypal legally enforceable rights, fully justiciable by courts and capable of protection by legal remedies. Rights such as the right to social security and the right to an adequate standard of living, on the other hand, are subject to progressive realisation and, as such, are less susceptible of judicial enforcement. In our view, in any parliamentary democracy it is the democratic branches of the State, that is, the Government and Parliament, which should have primary responsibility for economic and social policy, in which the courts lack expertise and have limited institutional competence or authority.
1.23 It follows, from this difference in the nature of the legal obligations imposed by the ECHR and by other human rights treaties, that political accountability for compliance with the UK’s human rights commitments under the UN human rights treaties is in practice even more important than legal accountability. Parliament therefore has a key role to play in scrutinising legislation to secure compliance with the positive obligations and minimum standards to which the UK has committed itself in those treaties.
… 1.35 We are disappointed by the Government’s failure to carry out any detailed analysis of the compatibility of the proposals in the Bill with the UK’s obligations under the UNCRC, the ICESCR and the UNCRDP. The legal effect of these human rights obligations in the UK is different in kind from the legal effect of Convention rights, which are given effect in our national legal system under the Human Rights Act, but they are nevertheless binding obligations in international law and the Government should be able to demonstrate that they have considered the compatibility of legislative proposals with those obligations. We have commended a number of human rights memoranda from departments in the past which have done precisely that.[25] We remind departments of this Committee’s expectation in this respect, which is explicitly referred to in the Cabinet Office Guide to Legislative Procedure.
This other published document also provides disturbing reading for those who observe the Rule of Law:
The proposals recognise the need to support those ‘who face the greatest challenges to leading independent lives’ but the overview impact assessment concludes that this may mean a reduction in support for some people. Whilst the stated intent to focus on those facing the greatest barriers to independent living is welcomed by the Commission, our view is that this aim does not justify and will not be achieved by putting targets in place to reduce the number of DLA recipients. It is critical that the assessment is about the individual and is not subject to targets or quotas based purely on reducing the number of DLA claimants. The Commission is concerned about the impact this could have on individuals’ standard of living, and could be counter-productive to government policies and initiatives to overcome barriers to work.
Conclusion
The Report’s authors must be congratulated on a comprehensive piece of work, on behalf of law students. That the Welfare Reform Bill may not be above the international or domestic “rule of law”, especially in relation to discrimination, equality or human rights, will give much need hope to disabled law students.
A day in the life of LegalAware
I had a very relaxing weekend. Boy, did I deserve it. I completed my BPP MBA written assessments in strategy, systems and operations, which gives us the skills to deconstruct corporate strategy and the efficacy of operations management. I sat the written paper in Holborn over about 3 hours, in which I was invited to write about how corporate social responsibility could be incorporated in strategy, and to what extent it benefited all stakeholders, and the case study which invited me to look at the competitive advantage of Spotify. The leadership examination was enjoyable too. I was asked to submit on a case study of change management in the NHS, implementing knowledge management. This was a joy for me as I had read the NHS Innovation and Improvement guidelines carefully, and I knew exactly the evidence base for their recommendations including some excellent papers from the Harvard Business Review.
So, on Saturday, I went to Cachao in Regent’s Park Road, here in Primrose Hill, to listen to tracks on my iPad, including ‘Suddenly I see’ by KT Tunstall, a song which has especial significance for me as ‘The Devil Wears Prada’ is a film that I strongly associate with, and ‘I was glad’ because I remember this booming out when I was sitting in Westminster Abbey as a Queen’s Scholar of Westminster School. As a disabled guy, I find the Cachao building itself very pleasant, and I have no difficulty in getting around. I was in fact featured this week in an article by Alex Aldridge of the Guardian on disability, discrimination and the law.
There, Sue and John were working tirelessly, in an incredibly smart and efficient coffee shop. Sue prepared an amazing ‘special’ which was terriyaki salmon on a bed of fresh salad. The dressing was amazing, but I can’t place what oil Sue used in fact – was it sesame oil?
Jenny also was there, albeit briefly – her toy shop directly next door is wonderful, especially if you have any toddlers whom you wish to spoil! I enjoyed reading a wonderful article on mental illness and leadership in the Financial Times by Christopher Caldwell (published Saturday), as well as an interesting article on the overproduction of barristers in the US (“overlawyered“) . I had a chance also to buy a copy of ‘Ecological Intelligence‘ which I glanced at, but I so much disagree with what Daniel Goleman has said, in parts, about emotional intelligence.
I will in fact be submitting a paper on the importance of cognitive and emotional interactions for management and leadership with my lecturer from BPP Business School (who also is a lecturer at Queen Mary and Westfield College Faculty of Business, of the University of London). This I feel is a glaring omission of Goleman’s construct, and my co-author has some excellent thoughts about how we may approach the paper. I will submit the paper to the Annual Review of Management around November, and I had the pleasure of running my theory past Prof Simon Baron-Cohen, my first ever proper supervisor during my decade at the University of Cambridge, last week during a busy time for me. Simon, at the University of Cambridge, advised me that possibly the only person who would disagree with my theory is Daniel Goleman, but hey, rock and roll! Simon has been acting professionally in advising my twitter friend and fellow Scot, Janis Sharp, mum of Gary McKinnon – Simon is an important world-expert in autism and the Asperger syndrome spectrum.
So, now, it’s business as usual. I am going to do the 500 pp proofs of my latest postgraduate textbook to be published on October 6th, and think in passing how brain-dead legal recruiters are. And I forgot – my 2 week holiday officially starts today, but I love my life anyway. I hope to listen to the Brandenburg Concertos again, a new purchase in my iPad2!
