Choice, Control and Obfuscation – How the Personalisation Dream is Dying

In the bold move towards a transformation in adult social care, it feels from where I sit, that control has completely overtaken any pretence of ‘choice’ in the so-called move towards more idealised ‘person-centred’ care and support planning.

I hope I’ve been clear over the years in which I’ve expressed a remarkably consistent view that I love the idea of people being able to choose the support plan they like from a wide menu of options with ‘professionals’ taking less of a role.  I am a massive fan of direct payments. I want people to have more personalised care and more creative care. Desperately. The options just aren’t there yet for people who lack capacity and that is a terrible disservice and inequity that is being served throughout the care system.

Removing care planning from my role doesn’t concern me – unlike those people on the training courses who bang the drums blindly about how wonderful and bright it looks when we allow people to choice whatever they like to put together packages of care, I don’t want ‘retain control’, I truly don’t believe that I, as a professional ‘know better’,  but likewise I know that with the user group I work with, it is rare that I can just hand someone a support planning tool and a list of potential providers and tell them to ‘get on with it’.

That is as far from reality now as it was 20 years ago in my work. While I can say that everyone I care co-ordinate who has a ‘package of care’ is now officially on a ‘personal budget’ and some even have direct payments, it hasn’t really increased choice or control for any but a couple of those people.

If anyone for a moment wants to ponder the duplicitious nature of those in policy making ivory towers who dribble down policies which they want to couch in ‘soft’ language so they are difficult to challenge, one only has to read a fantastic piece of research conducted and published on The Small Places site.

It is worth reading through the piece in detail. Lucy, the author, made a number of requests to local authorities to ask about how their Resource Allocation Systems (the link between the ‘assessment’ and the ‘cash’ – basically) was calculated.  She seemed to come up against a wall of obfuscation but it’s worth looking at her research in detail.

This reluctance for me, seems to relate to the lack and reduction in spending on care and support – the key ‘missing piece’ as to why a council can ‘reassess’ someone as needing less ‘cash’ than they did last year with a more traditional care package.

My personal experience is that the council I work in (and this is similar to things I’ve heard from people in other councils) probably doesn’t want to share it’s RAS because it’s ashamed of the utter dog’s dinner that it’s made of it. It doesn’t ‘work’. It doesn’t make sense. It is frequently changed. There is more emphasis on physical health needs as opposed to mental health needs and while there can be manual adjustments, some of the figures that are ‘spat out’ just seem nigh on ridiculous (and that works for sometimes calculating care ‘too high’ as much as a figure which is ‘too low’).  It comes down to everything needing to be qualified and fitted onto a spreadsheet when actually the needs of two people who might fill out a self-assessment with the same ‘tick boxes’ might have very different needs in reality – no RAS can account for that. One person might under-score because they are embarrassed by the process and don’t want to admit to being incontinent on an initial visit from a social worker because they haven’t been able to tell anyone other than their GP – another person might be anxious and think they can manage less well than they can. Sometimes and this is what local authorities and health services seem to find hard to account for, you just have to treat people and their needs as individuals rather than the subject of outcome measures, tick box performance indicators or resource allocation systems.

Shouldn’t personalisation be about putting the user at the heart of the system? Every user should have a copy of the RAS and how the figure was determined. Which questions are weighted and which aren’t. Without that, there flow of money and the control rests solely with the local authority.

I’m fully against ‘traditional’ care packages. Having someone anonymous and constantly changing pop in for a 30 min welfare check once a day isn’t about improving the quality, control and choice in someone’s life, it’s about a local authority doing the absolute bare minimum that they can get away with to fulfil their statutory duties of care.

The lack of openness about the ways that the RAS shows the true colours of the reasons for these pushes towards the Eden of ‘Personalisation’.

While I have no doubt that for some people, as I keep saying, those with advocates, family or who are able to voice their own needs clearly, have and will continue to benefit enormously from having direct payments – it’s worth remembering that direct payments have been available and accessible for many years now.

Forcing everyone onto personal budgets has only discriminated against those with carers by reducing the amounts of money they are entitled to through the RAS (that’s my own experience of how our local RAS works) and has discriminated against those who lack capacity by promising all sorts of ‘creative’ ways of exploring third party management of support plans but without providing any real ways of accessing it (this is my current bugbear as I have been requesting assistance with this for months for service users I work with but have been told it is not possible for older adults yet as only those with learning disabilities have budgets large enough to make it cost effective – thereby clearing discriminating on the basis of age and type of disability).

I have changed from a fervent advocate of a system which was supposed to be so much better for everyone to a bitter opponent of a system which favours some kinds of disabilities over others, some kinds of service users over others, some kinds of carers (those who are willing to put a lot more time in to manage and support plan where necessary) than others and all to provide fewer services under the guise of choice.

No wonder Burstow is pushing everyone towards direct payments. He is pushing everyone towards a system which masks the way that payments are determined and discriminates openly against people who lack capacity or who have the ‘wrong’ kind of disability or family support.

Now we know that the local authorities can hide the way they make financial calculations, it becomes much more obvious to see behind the facade of the ‘Wonderful Wizard of Oz’ who promotes choice as the final goal to achieve at all costs.

I feel tricked and betrayed by the implementation of the personalisation agenda and the lack of any of the services around it to tackle directly with the problems at it’s heart.

I was deeply disappointed, for example, that the Mental Health Foundation’s ‘research’ and work with people specifically with dementia only focussed on people who either had capacity or had family.  Their advice talks lovingly of setting up trust funds, appointing brokers – well, that is a fantasy rather than a reality and exists only on paper as a choice. They merely replicated a lot of work which was done when direct payments were rolled out around lack of take up for people with dementia and they hadn’t said anything new (I happened to write my dissertation about the lack of take up of direct payments for older adults so did actually do literature researches at the time..).

Anyway, I’m getting ahead of myself.

For now, I think it’s important that we who see through the cosy policy makers congratulating about a ‘job well done’ speak up and speak up loudly for those for whom the system is a further barrier for true individualised care because these self-same policy-makers see them as ‘too difficult’.

My title explains that the personalisation dream is dying but it isn’t dead yet. To be brought back to life, all those involved need to embrace the principles of honesty and openness and not blind themselves to their successes if they can’t see the continuing barriers.

Undercover Care : The abuse exposed – A Review of Panorama

I sat down to watch Panorama yesterday and the trailers and name of the programme were something of a giveaway so I wasn’t exactly unprepared for what was shown.

Panorama had been alerted to abuse within Winterbourne View near Bristol, which is a private hospital run by a company called Castlebeck for people with learning disabilities and autism and according to the description on their own website

..  is a purpose designed acute service, offering assessment and intervention and support for people with learning disabilities, complex needs and challenging behaviour.

It can also provide a service for those liable to be detained under the Mental Health Act 1983. It offers a stable, structured and therapeutic environment and the support of caring and dedicated staff.

Winterbourne View, which has 24 bedrooms, offers the chance for people to progress to more community-based living as part of their ongoing rehabilitation, at their own pace.

Winterbourne View charges an average of £3,500 per week for a place. I wonder how much is spent on staff costs and training.

Acting on the information from a former senior nurse there who had been whistleblowing, Panorama sent in an undercover support worker (journalist) and some hidden cameras. I knew I was prepared. I knew we were going to see abuse but nothing prepared me for the actual footage that I saw.

I try not to engage in hyperbole but what we saw was purely and simply torture of adults who have needs which make them more vulnerable.  Physical restraint was used as a punishment and some members of staff were deliberating provoking residents almost as if it were a sport and they were playing at bear baiting. It made for uncomfortable and emotional viewing.

I worked for many years in homes for adults with learning disabilities before I qualified as a support worker and the lack of humanity with with the residents in the hospital were treated was almost physically painful to watch. The programme showed a woman being given showers fully clothed and being dowsed with water outdoors on a cold, March day until she was shivering profusely. They showed her being pinned under a chair.

In one of the most troubling pieces of footage, a girl is shown as she had tried to jump out of the window and the staff mock her attempted suicide and taunt her to ‘try again’ and ‘make a better job of it’ saying things like ‘do you want me to open the window more’ and mockingly telling her she would make a ‘splat noise’. Even writing it out is difficult.

There were other things – comments made, pin downs and the use of martial arts techniques which are, unsurprisingly, wholly inappropriate and this footage was shown to a specialist psychologist with the Tizard Centre who would respond with the same gut horror that you didn’t need to be a psychologist to understand.

The footage really spoke for itself and I wondered about the position of the undercover journalist who stood by and watched some of the abuse occurring. There is an issue of ‘greater good’ versus ‘personal responsibility’ so the argument would be that the programme itself was able to prevent future harm coming to the residents by being transmitted but he admits that it was difficult for him.   He says here

I was watching on the sidelines, resisting putting a stop to this (abuse) and blowing my cover. Simone was staring at me as she lay on the floor, staring at the only person not abusing her.

I could not save Simone on that day. I had to resist my instinct to step in. I was there to gather the evidence that could help save others from a similar fate – and Simone herself from future abuse

Some of the more difficult responses came later in the programme as the CEO of Castlebeck was interviewed and of course expressed disgust and surprise at the levels of abuse in Winterbourne View. A company statement is published here and alongside all the usual guff is an acknowledgement that the whistleblowing policy was not adhered to when an initial complaint was made by a staff nurse on 11 October 2010. The footage was filmed between February and March 2011.

I was more furious by the response of the CQC. The whistleblower also contacted them, you see with the allegations of abuse. He contacted them three times.

Winterbourne View had last been inspected ‘two years ago’. Is that the kind of satisfactory inspection regime that we have, Mr Burstow? Oh, wait, it’s ok, because the statement from the CQC says Burstow has authorised a sample of 150 hospitals receive random unannounced inspections. Woah. Only 150? Only a random sample? Why just hospitals for people with learning disabilities? If random unannounced inspections are seen as necessary to prevent institutional abuse on such a wide scale, surely they should be the NORM for everyone who receives a service via a service inspected by the CQC.

No, you see, Burstow (and the Labour ministers before him) seem to think that self-regulation is the way to go. The way the man from the CQC squirmed as he insisted that the paperwork had been in order at Winterbourne View tells a tale all of its own.

And as for the staff, four have been arrested to be charged under s44 of the Mental Capacity Act which makes it an offence to ill-treat or wilfully neglect a person who lacks capacity.

It also begs the question – where were the Deprivation of Liberty Safeguards? Were any of the residents detained under DoLs  – or the Mental Health Act for that matter (as the hospital was assigned as such to accept people detained) and if that was the case, shouldn’t there be additional checks. Would independent advocates provide a further check?

There are a lot of questions that remain and the main one is the way that institutional abuse can fester in a residential care setting. There are wonderful care homes and hospitals around. I see them and I worked in them and often the ethos trickles down from top to bottom. Staff who see other staff abuse residents can ‘join in’ to be accepted – it is a classic position of bullying and unfortunately sometimes people who enjoy this kind of power play are attracted to work in social care. There needs to be an environment that does not accept this and that stamps down on it immediately and that was the real failing of Castleview.

This was not about 4 rogue members of staff. This was about an environment that allowed them to abuse and for that the senior management up to the Chief Executive should be responsible. Where is the support and training for staff who have to work in stressful environments? Where was the supervision that would have stamped out some of the abuse.  That doesn’t excuse those who were responsible for mistreatment  but it draws interesting parallels with the sacking of Shoesmith.  Wouldn’t we be baying for the blood of the CEO of Castleview? Or perhaps because the abuse took place in a private setting there are different lines of responsibility.

I think we should look long and hard about how we, as a society, seek to push people on the peripheries of society, because of age, disability or capacity to the margins of society and people to provide care who are not regulated and not supervised.

When the regulator fails so substantially as to ignore someone who whistleblows explicitly, do we not see a problem the ‘system’ that is increasingly reliant on proactive ‘complaints’ to trigger assessments?

There is much to do and much that needs to be changed.

I wouldn’t say I enjoyed the programme, it upset me and it angered me but I think everyone involved in the sector should watch it.

It can be viewed here on the BBC iPlayer.

Personalisation and Professional Disillusionment

Yesterday, Community Care published the result of a survey they had undertaken about ‘personalisation’ among social care professionals.

The headline figures while wholly unsurprising, make for interesting reading where only 41% of respondents felt that service users would benefit from the implementation of personal budgets and 83% felt that cuts would impede the progress of the personalisation agenda.

To which my first thought was ‘only 83%’?

Anyone who has read some of my previous writing/ranting about personalisation will be pretty clear where I stand.

While the idea and the concept of introducing more person-centred support planning and opening up direct payments to a wider range of people is absolutely fantastic as a concept, the implementation has been dire.

There has been a complete side-lining of service user groups that don’t fit into the ‘easy’ mode – namely those with mental health problems, older adults and those who might not have capacity to involve themselves fully in the support planning process, the same figures and quotes that the government and her agencies roll out again and again about the man who pays for a PA to go with him to a football match instead of a day centre are so completely off the radar when the smaller pool of money available for care services exist that they are almost insulting to those for whom a) the thought of having enough money allocated to pay for two tickets to a football match would equal 7 showers a week – so it’s football or cleanliness and b) that group of people (because, yes, much as the government don’t want to accept it, they do exist) that actually WANT to go to day centres.

And so we plough on.

But even though I have had many criticisms of the way that personalisation and particularly personal budgets either managed centrally by the local authority (where the end effect is exactly the same for the service users in most situations) or delivered by direct payments (where someone has to have capacity and desire to take on the direct payment and employ assistants or have someone who is willing and able to do that for them) – there is more to the personalisation agenda and process which is in danger of being lost in the process.

Personalisation as a value base and an approach to work and social work in particular with people who need or who are eligible to receive services for care ties in perfectly with aims of re-addressing the power differential between provider and ‘receiver’ and the imbedded dichotomy between ‘giver’ and ‘taker’ in society.

That model of giver/taker which is bound within the welfare state system can create an imbalance and the potential to give back some of the ‘control’ and some of the decisions to the person who receives services may, in some way, redress elements of this balance. There is no way that my training and experience has taught me better than anyone else, what YOU as a recipient need. Yes, I learnt my theories and my models and understand that building social networks is important but if you prefer to do that at a coffee morning at the local museum instead of at a day centre that’s perfect. If you want your neighbour’s granddaughter to help with your personal care rather than an anonymous and frequently changing ‘carer’ from a local agency who is paid at mimimum wage and has a day full of appointments and who isn’t paid for travel time by her agency so she needs to cut short on some of the time – perfect.

But we already had that system with Direct Payments. Where is the difference?

Ideologically, the difference was that everyone would know how much money they were ‘getting’ – whether directly or managed and they would be able to be consumers. Our society tells us that money is power. Money creates consumers and the market will right itself.

Even, theoretically, when a personal budget is managed by a third party (and I include the local authority as a potential ‘manager’) you will know how much is ‘allocated’ to you so that you can ‘spend’ it in the way you want.

This doesn’t happen in practice though because local authorities need to save money and are still tied up into procurement contracts that make agencies unequal when ‘bidding’ for the funds that have been allotted via personal budgets.

I know this is getting a bit technical and complicated but it’s important to understand. I don’t think anyone can oppose ‘personalisation’ as an approach regarding empowerment and ideology.

The implementation, however, reeks of money-saving and penny pinching. It also has pushed the responsibility for services away from the local authorities and onto individuals and their carers.

You have £100 per week, find the care yourself – then we (the LA) aren’t responsible anymore.

I’m wholly in favour of contracting out assistance and advice on self-assessments and support planning to local voluntary sector organisations. My own LA tried that. We referred lots of people to them.  They withdrew because we were referring too  many people to them and the local organisations didn’t have the resources (or the contract) to undertake as many support plans as were being referred – but the idea is not one I have any problem with and in fact, I rather like it.

But this wasn’t offered to people who do not have the capacity to lead in their own self-assessment and support planning. The organisations couldn’t do that because they were not experienced in non-directed advocacy work – it takes longer.

It is hard to see through the budget cuts as well towards a future where, as Burstow as said he wants direct payments to be the ‘preferred method’ of delivery of personal budgets.  I don’t want to detract from the fact that this is and will be fantastic for some, perhaps most people, we move to a model where there is – again – a ‘one size fits all’ approach.

The true tragedy of the personalisation agenda is that is has and is coming to fruition during a period of cuts – the government (and the previous Labour government too) want to pull back the responsibilities of local authorities and with the criteria for accessing any support is rising rapidly it may well be that more and more personal budgets are delivered directly from peoples’ own savings or disability benefits (while they still exist).

I am fearful of the future for adult social care but I’m not necessarily unhopeful.

I think there is potential for change and development but unfortunately the ways I see of improving systems come at higher cost.  There has to be some major research and debate about the delivery of personal budgets and the way that personalisation encompasses people who lack capacity and lack advocates (family and friends) and how they can best benefit from this process – perhaps access to additional funds to pay for the trust fund type system of management we were assured would happen but in practice is not feasible for a relatively small sum of money as it costs more than it might deliver.

We need to see more about how support planning can work in the voluntary sector as, speaking personally, I genuinely don’t have time to do the process of support planning any justice as a part of my day to day job. It ends up being rushed because I can’t devote a couple of visits of a couple of hours to talk through and develop a truly person centred support plan.

The process of self-assessment needs to be reconsidered because while the idea is fantastic for some people – our self-assessment forms are biased towards physical disabilities and look scarily similar to a DLA form where people are asked to explain how they are on ‘their worst day’. That doesn’t really help with confident-building when you are working with someone who has very low self-esteem and depression/anxiety. The process of self-assessment in itself can and has been traumatic – let alone the person who is not able to engage with the assessment process due to a lack of mental capacity where questions about ‘dreams, hopes and wishes for the future’ while well-intentioned, can be hurtful and hard for families to listen to when they are asked to their parent who has advanced dementia.

I fear we have allowed a great conceit to be steamrollered into simply another ‘one size fits all’ approach to developing social care. It doesn’t have to be like this but that seems to be the government perception about what ‘personalisation and personal budgets’ are.

Choice is fantastic of course, but sometimes people want quality as well. It shouldn’t ever need to be an either/or. It does feel like it at the moment with the promotion of choice above all things.

So where are we going? Personalisation isn’t going away and nor should it. Personal budgets aren’t going away and nor should they.  Local authorities, however, might be going away – further and further away from social care and the responsibilities that they hold towards it.

We keep up with the advocacy and with the systems that are failing because we owe it to those who are reliant on these systems to make them work as best they can but we keep trying to pinpoint and pin down the flaws in the implementation with the hope that sometime, some day, someone will listen.

As professionals we don’t oppose personalisation. We have always been trying to use person-centred approaches. We just dislike injustice and inequity and that seems to be painted all over the current implementation and the frustration is that so few people (if any) in government seem to be aware.  Am I disillusioned? Yes, definitely. We were promised new ways of working in a more person centred way.

Desperate, no, not yet though as long as there’s some fight left in the belly to keep banging on and on and on about what personalisation SHOULD be and why it isn’t working yet. Not for everyone.

The Disgrace of Individual Budgets

I have a few words for Paul Burstow, the Minister responsible for Care Services, who is appalled, according to Community Care, about the low take up and roll out of personal budgets in Adult Services – the take up is so far only 13%.

He said to his party’s conference

“It’s disgraceful. We need to be far more critical of public services. Why are they not willing to let go of control?” He was speaking at a Liberal Democrat conference fringe session on social care and the government’s Big Society agenda.

Excuse me for a moment while I scream with frustration.

Back.

NOT WILLING TO LET GO OF CONTROL?

What does he think that the lack of roll-out is to do with a nefarious political plot to hold on to the control aspect?

No, it’s not. It’s all to do with poorly adapted and poorly administrated systems and piloted exclusively in teams and departments that were ‘easy’.

Where are those 13%? I can bet they are with adults with physical disabilities and adults with learning disabilities where a lot more resources and efforts had been pumped into direct payments so they had a sound base to start on.

That 13% is also likely to include older adults who have capacity and families to help advocate for them.

We have some quite rightly wonderful accessible easy read documentation for the forms with beautiful pictures that show who effective support planning can be in the learning disabilities field – but where is the real research for people who may lack capacity to make decisions due to dementia – for whom the same type of documentation is not relevant because in general, those who are support planning will have much less time and much less money to ‘be creative’.

Where the systems have not picked up is with those who do not have the families and friends who are able to invest a lot of time into creating personalised packages – of the people who do not have the capacity to manage and organise their own care – for whom the system of individual budgets will not change anything too dramatically.

I wish Mr Burstow would meet and talk with people who actually DO the job to understand the difficulties, rather than meeting and talking to people who manage people who do the job or people who write the policies or people who audit accounts.

I want to give up control. Believe me I do. It might mean some respite in the constant stream of care management duties that spring up incessently. Sometimes though, it isn’t all about retaining control but maintaining quality as well. Sure, if a capacitious decision is made, all is well and good and the right remains, as it should, with the end user, but where there is a decision that needs to be made on behalf of another person, the choices are already limited.

Why should someone have a potentially poorer service through a provider agency because they are not able to manage a bank account and do not have anyone who can assist them – sure, theoretically the local authority can hold the account but who makes the decisions about PAs and flexibility?

There is little doubt that high quality regular care provided by a small group of people or person is the favoured option for those that have successful care packages. People whose direct payments have been most successful have worked because of the people they have employed directly as often as not. However this is not a service which is offered through this system to people who lack the capacity to act as employers and who either don’t have families or don’t have people who can do this on their behalf – they still remain with agency providers which most people agree offer a poorer service.

This is my gripe and my main upset with this system. It is inherently discriminating and providing a poorer service to people who don’t understand the systems. If social workers had caseloads of 10, we might be able to do this on someone’s behalf but it is not possible with the workloads that are carried in older adults services.

So the people who ‘can’ get a gold star service and the people who ‘can’t’ get exactly the same as they always got.

That is both demoralising and unfair. It makes me cynical of the whole system and those who advocate it because perhaps if this could have been thought through at the time, we wouldn’t be lagging so far behind of targets.

Sure, I’ve been to the training, I know about the trust funds that can be created to manage care but how many people in older adults’ services are going to have packages that pay enough to establish and operate a trust fund as well as paying for it’s maintenance. The answer is not very many.

The way the  roll out has been managed, stinks. For people it works for, it works very well – but there are many people whose needs and wishes have not been able to be accounted for in the way the forms have been written and the way the processes work. That might be unique to the local authority I work in – it must work well somewhere.

But these lavish statements of Mr Burstow, they grate incessently and I say that as someone who would love this system to work but who is ground into dust by the ways it has been implemented.

The Next Steps

The new coalition government published some of the details about their plans for the next five (gulp) years yesterday. I had a brief glance at the issues as they relate to social care in particular.

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I feel distinctly underwhelmed, I have to say. I’m glad the Tories’ ‘insurance scheme’ has hit a road-block at least. It made no sense at all to me and didn’t really address a lot of the more widespread issues relating to social care funding. The Lib Dems  seems to have dragged them back to the idea of negotiations and discussions.

Negotiations and discussions and commissions. That’s a bit of a drag. Haven’t we been here before? A few times. I know realistically there wasn’t another way forward but it feels like there is constant ploughing over the same paths again and again with more consultation documents about the same things. I wonder if the government really are serious about saving money when they just repeat the same consultations endlessly. At least the document mentioned the Wanless Report (which, incidently, I have a lot of time for). I wonder what difference the consultation will bring from consultations raised over the last few years and it seems like just another chance to delay the decision making even more.

All the other policies presented, apart from the completely unsurprising trashing of the ‘Personal Care at Home Bill’ which to be honest, didn’t make a whole lot of sense to me anyway, are just progressions of the ways things were moving in social care anyway.

As the Secretary of State for Health confirms

Today’s coalition announcement sets out how the Government will push forward reform of social care. The Government will:

• establish an independent commission on the funding of long-term care, to report within a year;

Unsurprising – see above

• break down barriers between health and social care funding to incentivise preventative action;

More preventative action can’t really be argued against. Preventative work has been completely neglected in the face of cost-cutting in the short term and meeting performance indicators. I’ll be keeping a close eye on this one.

• extend the greater roll-out of personal budgets to both older and disabled people  and carers to give more control and purchasing power; and

This was always going to happen regardless of which government was in power.

• increase direct payments to carers and better community-based provision to improve access to respite care.

Nice words – actually there has been a massive increase in respite provisions over the past few years and increasing it can only be a good thing.

The government has also promised to increase and prioritise funding into dementia research which is very positive. I wonder how much funding will be spared the scythe of government cuts in general though.

Burstow has been appointed as the Care Services Minister. He has, I understand, a fairly positive background in speaking up on social care matters. It could have been a lot worse, I guess and we’ll see if he has the power to battle it out with the Chief Secretary to the Treasury in order to secure funds for the department and the sector.

So I remain a little ambivalent. It’s hard to argue against any of the provisions made but where the difference will be made is in the amount of money that can be argued away from the Treasury by the Department of Health in the coming months.

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