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Time for a new regeneration. The New Secretary of State for Dementia.



3SOS

Ed Miliband looks a bit awkward eating a bacon sarnie, or simply looks a bit “weird”. This man doesn’t look like your next Prime Minister?

But switch back into the reality. A cosmetic reshuffle where the present Coalition had to ditch a Secretary of State more toxic than nuclear waste from Sellafield to transport in a catwalk of tokenistic young hopefuls, “governing for a modern Britain”.

And engage a bit with my reality: where English law centres have been decimated, nobody is feeling particularly “better off” due to the cost of living crisis, GPs have been pilloried for being “coasters”, criminal barristers have gone on strike, or you can’t get your passport on time.

Whisper it quietly, and nobody wants to admit it, that despite all the concerns that Labour will front another set of middle-class neoliberal policies, Labour is in fact going to walk it on May 8th 2015 as the new UK government.

This will obviously be quite a shock to the system, and you can already feel the Civil Service behind the scenes mentally preparing themselves for a change in flavour for the dementia policy.

The current dementia policy had “Nudge” fingerprints all over it. “Customer facing” corporates could become dementia friendly so as to allow market forces to gain competitive advantage for being ‘friendly’ to customers living with dementia.

The Alzheimer’s Society got thrust into the limelight with the Prime Minister’s Dementia Challenge, ably supported by Alzheimer Research UK, to offer the perfect package for raising awareness about dementia and offering hope for treatment through basic research. This private-public partnership was set up for optimal rent seeking behaviour, with the pill sugared with the trite and pathetic slogan, “care for today, and cure for tomorrow.”

Except the problem was that they were unable to become critical lobbying organisations against this Government, as social care cuts hit and dementia care went down the pan. Dementia UK hardly got a change to get a look in, and it looked as if a policy of specialist nurses (such as Admiral nurses) would get consigned to history. They are, after all, not mentioned in the most recent All Party Parliamentary Group report on dementia.

It is widely expected that Labour’s NHS policy will be strongly frontloaded with a promise of equality, which the last Labour government only just managed to get to the statute books. Insiders reckon that this policy will be frontloaded with an election pledge with equality as a strong theme.

In the last few years, it has become recognised that caregivers feel totally unsupported, people get taken from pillar to post in a fragmented, disorganised system for dementia with no overall coordinator, and there are vast chasms between the NHS and social care treatment of dementia.

The next Government therefore is well known to be getting ready for ‘whole person care’, and it now seems likely that the new Secretary of State for Health and Care under a new government will have to deliver this under existing structures. This will clearly require local authorities and national organisations to work to nationally acceptable outcomes for health and wellbeing through empowered Health and Wellbeing Boards. This will help to mitigate against the rather piecemeal patchwork for commissioning of dementia where contracts tend to be given out to your friends rather than the quality of work. Health and Wellbeing Boards are best placed to understand wellbeing as an outcome (which can become missed in research strategies of large corporate-like charities which focus on care, cure and prevention).

And the switch in emphasis from aspirational friendly to a legal equality footing is highly significant. The new policy for dementia under the new Secretary of State will be delivering what people living with dementia have long sought: not “extra favours”, but just to be able to given equal chances as others. Environments will have signage as reasonable adjustments for the cognitive disabilities of people living with dementia in the community under the force of law, rather than leaving up to the whim of a corporate to think about with with the guidance of a fundraising-centred charity to implement.

With the end of the Prime Minister’s Dementia Challenge in March 2015, which has been highly successful in places in delivering ‘dementia friendly communities’, a commitment to improved diagnosis rates and improved research, it is hoped that the next government will be able to take the baton without any problems. It will be quite a public ‘regeneration’ from Hunt to Burnham, but one which many people are looking forward to.

Dementia care in the whole person care age



The Australian jurisdiction have recently provided some helpful inroads here.

The narrative has changed from one of incessantly referring to people living with dementia as a ‘burden’ on the rest of society. For example, to push a sense of urgency that we have an ‘ageing population timebomb’, the cost of the ageing people with dementia flies completely in the face of other public health campaigns which emphasise, for example, “dementia is not a natural part of ageing”.

“The NHS as a whole and individual hospitals recognise that dementia is a significant, growing and costly problem for them” is the opening gambit of the Alzheimer’s Society “Counting the cost” report.

An easy to use online resource, Valuing People from Alzheimer’s Australia has been developed in collaboration with community aged care providers who have helpful in stablishing a person centred approach to service delivery.

Person centred care is a development to provide ervices provided in a way that is respectful of, and responsive to, the preferences, needs and values of people and those in the care and support network.

AlzAus

I cannot recommend this resource highly enough. The main source is here.

In fact, it summarises succinctly the conclusions I came to after my exploration of personhood in my book ‘Living well with dementia’.  The late great Prof Tom Kitwood said of personhood, “It is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust”.

If a Labour government is elected on May 8th 2015, the first necessary step is to legislate for the repeal of the Health and Social Care Act (2012) and to enact new legislation to allow for integrated packages provided they are justified by clinical outcome. For this to happen, it will be necessary for Labour to undergo a ‘conscious uncoupling’ from all the baggage of EU competition law. For this, it is essential also that the UK government is able to carve out provisions from the investor protection clauses and/or the rest of the EU-US free trade treaty (TTIP).

The “whole person care model” has become attractive to those who wish to break down silos between different physical health, mental health and social care “silos”. It has been worked up in various guises by various parties.

A helpful construct is provided in the document, “Healthcare for complex populations: the power of whole-person care models” originally published by Booz & Company in 2013.

A major problem with dementia care, however it is delivered, is that it is full of divisions: public vs private care, fragmented vs national care, competitive vs integrated models.  Operating in silos can’t work because of the nature of the dementias: the mood and cognition of a person with dementia profoundly affects how they might interact with the outside world, for example perform activities in the outside world. And we know that taking part in leisure activities can promote a good quality of life.

Their model is, though, a useful starting point.

Booz

Dementia cannot be only addressed by the medical model. In fact, it is my sincere belief that it would be highly dangerous to put all your eggs in the physical health basket, without due attention to mental health or social care. For example, last week in Stockholm, the international conference on Parkinson’s disease, a condition typified by a resting tremor, rigidity and slowness of movement, which can progress to a dementia, often is found to have as heralding symptoms changes in cognition and mood.

So it’s pretty clear to me that we will have to embark on a system of multidisciplinary professionals who could all have a part to play in the wellbeing of a person with dementia, depending on his or her own stage in life, and ability or need to live independently. “Care coordinators” have traditionally been defined incredibly badly, but we do need such an identity to navigate people with dementia, and actors in the care and support network, through the maze.

“Care collaborators” in their construct are very wonkily articulated, like “pre-distribution”, but the concept is not stupid. In fact it is very good. One idea is that people with dementia could act as support as other people with dementia, for people on receiving a diagnosis of dementia. The rationale for this is that people living with long term conditions, such as for example recovery from alcoholism, often draw much support from other people living with other long term conditions, away from a medical model. There needs to be safeguards in the system to safeguard against a lot of unpaid goodwill (which currently exists in the system.)

Informatics would have a really helpful rôle here, being worked up in telecare and assistive technology. But even simple disruptions such as a person living with dementia at risk of falling from problems with spatial depth perception being able to ‘hot email’ a care coordinator about perceived problems could trigger, say, an early warning system. And with various agents in the provision of care being involved in differing extents it will be up to NHS England to work out how best to implement a single accountable tariff. Falls are just the sort of ‘outcome metric’ which could be used to determine whether this policy of ‘whole person care’ for people living with dementia is working. And, even though everyone ‘trots it out’, the performance on avoided hospital admissions could be put into the mixer. It’s already well recognised that people with dementia can become very disoriented in hospital, and, and despite the best efforts of those trying to improve the acute care pathway, people with dementia can often be better off away from hospital in the community. But it’s imperative that care in the community is not a second-rate service compared to secondary care, and proper resourcing of community whole person care is essential for this before any reconfiguration in acute hospital services.

But the private sector has become such a ‘bogey term’ after arguably the current Government overplayed their hand with the £3bn Act of parliament which turbo-boosted a transfer of resource allocation from the public to private sector. Any incoming government will have to be particularly sensitive to this, as this is a risk in strategy for the NHS.

In October 2005, Harold Sirkin, Perry Keenan and Alan Jackson published a highly influential article in the Harvard Business Review entitled “The hard side of change management“. Whilst much play has in fact been made of politicians having to be distant from running the NHS, a completely lubricous line of attack when it is alleged that Jeremy Hunt talks regularly to senior managers and regulators in the NHS, the benefits of clear political leadership from an incoming Labour government are clear.

Andy Burnham MP has already nailed his colours to the mast of ‘whole person care’ on various occasions, and it is clear that the success of this ambitious large scale transformation depends on clear leadership and teamwork from bright managers. Take for example the DICE criteria from Sirkin, Keenan and Jackson:

DICE

But this is perfectly possible from an incoming Government. The National Health Service has a chance to lead on something truly innovative, learning from the experience of other jurisdictions such as Australia and the USA.

As alluded to in the new resource from the Alzheimer’s Australia, this cultural change will require substantial ‘unfreezing’ from the current mindset for provision of care for people with dementia. It will require a change in explicit and implicit sources of knowledge and behaviours, and will need to be carefully brought about by learning from the successes and failures of pockets of implementation.

The whole project’s pretty high risk, but the rewards for people living with dementia, and members of the care and support network, are potentially vast. But it does require the implementation of a very clear vision.

 

 

@legalaware

 

[First posted on the 'Living well with dementia' blog]

I'm a Labour member who despairs over our leadership on welfare; and I'm not the only one



 

 

So what’s new? This is yet another article about Labour and welfare. George Osborne wanted a debate about welfare, but he wants people to be united against ‘shirkers’ staying in bed while good citizens go out-to-work.

 

I don’t want even to go into that tired debate about working tax credits, and how the people Osborne appears to be targeting are low earners in society. I don’t wish to go into the billions of other arguments concerning this huge part of the budget, for example whether the “millionaire’s tax” would have ‘covered the costs’ of the “bedroom tax”. But increasingly I sense an overwhelming impression from Labour members like me an engulfing sense of despair. This is not about the top 15 things that Labour has promised to repeal or enact on gaining ‘power’, although virtually all of that list has to be cautioned against the state of the economy that any government will inherit in 2015. There are certainly too many variables and unpredictable externalities on the horizon, which makelife difficult. Labour is undergoing a complex review, and indeed people can contribute to the policy discussion through their website. However, there is simply a sense that the Labour Party has lost its identity, and that many people would simply like to quit and “up sticks”. Much of this is that Labour sets out to be a social democratic party, not a socialist party, so therefore has a real ideological problem with saving failing hospitals in the NHS; it paradoxically does not appear to have a problem in saving banks, increasing the deficit, creating billions of bonuses for some bankers in the cities. It engaged in ‘buy now, pay later’ behaviour which meant NHS hospitals, in the name of public infrastructure investment, being put on commercially-confidential contracts lasting decades at interest rates which most agree are competitive.

 

Labour’s fundamental problem is that it has fallen into the ‘bear trap’ of following not leading. 62% of people think that spending is too high, and indeed Philip Gould, Alistair Campbell and Peter Mandelson are reputed to be fond of ‘focus groups’. However, 99% of Sun voters are reputed to ‘back the Death Penalty’, and no-one is seriously proposing that Ed Miliband should ‘back the penalty’ to get elected. There is a sense that Ed Miliband will jump on any fast bandwagon going, but to give him some credit he has in fact caught a national mood over certain issues such as press regulation. However, many Labour voters feel that Ed Miliband does not share this passion over certain key issues.

 

Ed Miliband exhibits ‘a stuck gramophone syndrome’ when speaking about “vested interests”, which appears to be Miliband’s contorted way of reassuring the public that the Unions are not round for ‘beer and sandwiches’ every other day. But Ed Miliband simply has to emphasise, as he has tried to do to some extent, that it is the members of the Unions who, uptil now, have backed him not “the Unions” as neolithic organisations per se. Miliband has failed to make clear the essential democratic nature of the Unions, and if he has any sense of history of the Labour Party (which he does), he will wish to emphasise this. If he wishes to make the party wholeheartedly social democratic, he will not care. Surely members of Unions, such as “hard-working” (to use that tired word) nurses and teachers, will wish to have an input into nursing and teaching policy as much as private equity companies who are literally lobbying behind close doors on education and teaching policy? Labour is caught in a trap of advancing neoliberal policies of setting off hospitals against hospitals and schools versus schools, so has totally lost sight of its socialist sense of solidarity. It is currently, on welfare, allowing the debate to be ensnared and enmeshed into a discussion over ‘lazy shirkers’, and one person with 17 children setting fire to his house, but do not wish to establish basic truths about welfare for disabled citizens: that is, the living and mobility components of the current ‘disability living allowance’ do not constitute an employment benefit, but are there to help to allow disabled citizens cope with the demands in life: to use wonk speak, “to allow them to lead productive lives”.

 

Ed Miliband is also following not leading on the economy. The semantics of whether we should analyse the nature of the boom-bust cycle as FA Hayek would have wished us to do rather than the drawbacks of Lord Keynes’ “paradox of thrift” do not concern the vast majority of voters. However, workers who are being paid pittance, and certainly those below the statutory minimum wage, do not hear Labour screaming out from the rooftops about this achievement, which even happens to be an achievement of a Blair government. Ed Miliband has somehow managed to screw up discussions of ‘a living wage’, not in terms of allowing living standards for workers and employees, but through a convoluted discussion of ‘pre-distribution’ and the academic career of Prof Joseph Hacker (called Mr Hacker by David Cameron in ‘Prime Minister’s Questions’). Workers and employees are concerned that they can be ‘hired and fired’ below the minimum length of service (which this Government is set on reducing anyway), and that any awards for unfair dismissal will be less in future. Voters want some sort of protection through the policies of a Labour government, to curb the excesses of multi-national corporates for example, not a protracted list they can retweet at length on Twitter of the top 15 things Labour would repeal in 2015. This is basic stuff, and it is galling of a Labour opposition not even to do their fundamental job of opposing. Virtually everyone agrees that a strong opposition is essential for English parliamentary democracy.

 

Labour simply exudes the impression of a political party that has lost its direction, will say or do anything to get into power (while spouting platitudes such as ‘we don’t want to overpromise and under-deliver’), and is totally cautious about what offerings it possibly can supply to the general public in future. Nobody is expecting them to have a detailed manifesto, but a sense of the ‘direction of travel’, in other words people saying that disability living allowance is not an employment benefit, or that Labour would seek to curb his ‘hire-and-fire culture’ and discuss with the Unions how to go about this, would help enormously. Another critical problem is presented by the sentiment conveyed in Adnan Al-Daini’s tweet this afternoon: “If the #Labour party is going to mimic the Tory party at every step what is the point of it? Same policies different rhetoric! #hypocrisy”. Labour, at an increasing number of junctures it seems, appears to be quite unable of opposing convincingly because of its past. I am the first person to promote rehabilitation, but this is genuinely a problem now. It is claimed that Labour introduced the equivalent of the “bedroom tax” for the private sector, so themselves should not be aghast that this has been proposed on an ‘equal playing field basis’. I happen to oppose strongly the “bedroom tax”, as it appears to discriminate against sections of the population, such as disabled citizens. The NHS is another fiasco. Labour ‘as the party of the NHS’ can offer to repeal the Health and Social Care Act (2012), but this is a symbolic (and rather vacuous) promise. The problem with Foundation Trusts still in a ‘failure regime’ will exist, the issue of hospitals paying off their PFI loans on an annual basis will still exist, and it was Labour themselves who legislated for an Act of parliament managing procurement (the Public Contracts Regulations Act); through a long series of complex cases, NHS hospitals have become enmeshed in EU competition law, but Labour had, whether it likes it or not, set in motion a direction of travel where hospitals would be caught in the ‘economic activity’ and competition law axis of the EU.

 

What Labour obviously did not legislate for was to allow up to 49% of income of hospitals to come from private sources, nor to make the legislative landscape most amenable for private providers to enter with the lowest barriers-to-entry; it was a policy decision of the Conservatives and the Liberal Democrats not to give the NHS any unfair ‘protection’, meaning that the NHS would of course be expected not to provide anywhere near a universal, comprehensive service. However, as the marketisation of the NHS and privatisation has been accelerated, but one in which Labour to a much lesser degree did participate, it is hard for Labour to provide convincingly a narrative on what it wants to do next. Labour seem very eager to produce apologies at the drop-of-a-hat, such as on immigration (which came to a head with the Gillian Duffy altercation after Gordon Brown forgot to remove his clip-on microphone and Sky happened to take a recording of it). It has tried to apologise for the emergency spending on the banks during the global financial crisis, but experts are far from convinced about why the banks were not allowed to fail; it is an inherent paradox in the Labour narrative that it seems content with allowing NHS hospitals to fail, but seems reluctant to allow banks to fail (meaning shareholders and directors of banks can be rewarded, and Labour gets blamed for the exploding deficit).

 

Against the backdrop of a false security of poll leads perhaps, Labour’s performance is floundering because it just appears to be opposing for the sake of it; it is now a rational accusation of the Coalition to say that Labour opposes virtually everything (except for Workfare and the “benefits cap” perhaps), but does not appear to have constructive policies of its own. Despite its rhetoric on “vested interests”, it seems perfectly happy to honour the contracts it started with ATOS over the disastrous outsourcing of welfare benefits (which has seen 40% of some benefits overturned on appeal, and some claimants reported to have suffered psychological distress through the benefits application process), yet, apart from a handful of excellent MPs such as Michael Meacher, seems rather limp at criticising this particular ‘vested interest’. It is a problem when the public perception of Labour protecting multi-national vested interests overrides its ‘loyalty’ to the Unions. It is also a problem when two years into the leadership of Ed Miliband the media are unable to report the closure of law centres or the problems of the NHS privatisation process but can only report how to self-litigate and what to expect from your GP in this new NHS landscape. Ed Miliband’s fundamental problem is that he gives the impression of being a follower not a leader. Miliband appears like a TV newsreader, nicely a product of “make up”, but whose autocue is suffering a technical fault. Labour does not currently inspire confidence. If it is the case where the best Labour voters can hope for is a ‘hung parliament’, despite glaring incidents of an #omnishambles government, something is very wrong indeed.

Owen Jones and the case for engagement at #NetrootsUK



 

Source: @JonWorth, tweet

 

 

Pervasive in yesterday’s successful #NetrootsUK day at Congress House here in London was how people could feel part of Society. Not a Big Society, just Society. Nick Clegg and David Cameron have given ‘divide-and-rule’ a whole new dimension instead, by pitting the public sector workers against the private sector, by pitting indigenous people against immigrants, by pitting younger people against older people, and by pitting the disabled population against the non-disabled population; they have not supported the unemployment and disabled, but actively sought to stigmatise them through their policies.

For Nick Clegg and David Cameron, this is particularly deceitful as they have senior experience in public relations. As Nick Cohen writes this morning in the Guardian, any Keynesian policy to reverse now the shocking decline of Britain would take years to implement, and indeed Lord Skidelsky, who is the official biographer of John Maynard Keynes, feels that Vince Cable is not a Keynesian (George Osborne is clearly not).

The case for engagement is even more compelling, when many people feel utterly disenfranchised by the Tory-led BBC. The routine news coverage of the BBC borders on a Pravda-esque approach to journalism (an image I thank James Macintyre for). Without the social media, it would have been impossible for disabled campaigners Sue Marsh (@suey2y) and Kaliya Franklin (@bendygirl) to get their messages across about the lies which the government, with the assistance of the BBC, have been spreading about disabled people, as evidenced in the Spartacus Report.

That is what made Owen Jones’ speech at the #Netroots conference so special, in my view. But it was very special for another reason. Ed Miliband, in his final hustings at Haverstock Hill Comprehensive School, poignantly warned us that we must not view the Unions as the evil uncle of Labour. What truly appalled me was to see an army of young ‘activists’ in their 20s, armed with their iPhones and Blackberries, saying that the Unions are ‘irrelevant’ to them. The Unions are in fact the largest democratic movement in the UK with over 3.5 million members. Union membership is not closed to Labour. Crucially, the Unions campaign very actively for the enforcement of rights of citizens, particularly in employment. The fact that Thompsons Solicitors, an eminent law firm, is on the ground floor of the building #Netroots was hosted in for the second year-in-a-row is a testament to that. John, who helped to organise yesterday’s event superbly in my mind, took time to explain his ‘Stop employment wrongs‘ project which he had been working on. This is incredibly relevant to members of the Society I wish to live in.

That Society, symbolised by allegations of conspiracy to pervert the course of justice and a fine to banks for the #LIBOR scandal, at worst is a society driven by shareholders with only thing in mind – their shareholder dividend – is utterly galling. Yes, maybe I’d like a stop to the ‘something for nothing society’ – maybe the Tory-led BBC would like to launch a campaign on millionaires in the cabinet paying more tax on their dividends, as strictly speaking that is income rather than wealth for the economic moral-purists.

 

Owen’s talk in full which I recorded from the front row yesterday afternoon

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