Category Archives: dementia

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.

Technology, Social Media and Social Services – Finding new ways to ‘help’

iPad con dock y teclado inalámbrico

Image via Wikipedia

I have some across lots of discussions and debates about ways of using social media and new technologies and interactions to ‘help’ social services become more effective. Most of it seems to revolve around building online directories and databases of micro providers and services that are available which build on so-called community capacity to improve the way that personal budgets can or might work.

At the risk of sounding overly cynical there is nothing ‘innovative’ in my mind about building a directory of services.  To me, this is not a particularly innovative way to use ‘technology’ in social services.  It taking a very obvious and well-trodden route to using new technologies. Providing directories while being useful to a certain group of people again exacerbates the isolation of those who are not party to or able to use them.  Being innovative isn’t always necessary to be helpful but it is very important that new ideas are focussed so we don’t just end up with increasingly specialised, localised directories that might have more ‘interactive’ features and feedback, look more ‘user led’ and compatible with the buzz words of social media but in the end they are brushing the surface of possibilities.

It feels more and more as if that there is a growing division between the ‘haves’ and ‘have nots’ as far as personal budgets have been extended and does absolutely nothing to address or use technologies to address those who reside continually in the ‘have not’ section.

While at work, we labour with database systems that have clearly been developed through conversations between commissioners and software companies without any recourse to frontline practitioners, nice new provider directories are being tinkered around with while the fundamental foundations of the systems we work with remain resolutely inaccessible.

I’ve had a few ideas myself and whilst I lack the technological expertise to see any of these ideas to fruition, this is a kind of ‘wish list’ of the sorts of things I’d like to see.  I’m under no illusion that these are ‘new’ ideas. I am sure similar things already exist in some form but they are things I’d like to see pan out in the longer run. Things I’d like to use at work.

I’d like to see more creativity in the use of technologies to assist with decision making for adults who have some kind of cognitive deficit. I’m a great fan of the ‘tablet’ and ‘touch screen’ model as I think it is intuitively an easier interface to understand.  When I see people instinctively reach out to touch the screen of my Kindle (which isn’t touchscreen!) I realise that we are becoming conditioned to seek the easiest input methods which are about touching a screen and speaking into a microphone and perhaps writing on a tablet. Now, voice recognition has improved, I’m yet to come across very successful handwriting recognition (possibly because I have scrawly almost illegible handwriting) but there is potential there. In the meantime, pictures and touchscreens seem like a good way to go.

Using pictures/sounds/music it can draw on multi-media ‘shows’ and explanations of different options – moving beyond the ‘written word’. Providing documentation in aural form or in pictorial/moving form rather than reams of leaflets. Having recordings of familiar voices or pictures of familiar faces might help to reassure. I’m a great fan of telecare in general with the proviso of always being mindful that the human contact is not replaced but in days where human contact is sparsely provisioned anyway, it may be something that can be experimented with.

Why not a YouTube type video to explain how services can be chosen instead of reams of ‘easy read’ leaflets which really aren’t remotely ‘easy read’. Instead of flooding people with lists of providers (which, while good for some ignores those who are restricted in terms of capacity and carers to choose ‘freely’ the types of services they garner) why not explain and expound in different ways the ways that services can work?

Why not explain providers in terms of what they can actually provide and what purpose they serve rather than creating directories that are meant for people with a good understanding of what they want and need?

I was in a day centre last week and there was a seemingly unused Wii. I wonder if he Kinect might be a better project to develop some type of interactive play, exercise and work as it doesn’t need a controller at all and uses the more innovative way of body movement.  Using participatory games with larger screens in company can provide different stimuli. I know why games developers  haven’t tackled directly the ‘older’ market with games that might otherwise reside in memories but why not repackage old school yard games and board games with Kinects and iPads? It may be a good way to introduce the use of these new technologies in a ‘friendly’ manner which may then see them used in other wider ways – such as directories or personalised information sources. Using YouTube video channels for personally designed ‘reminiscence’ therapies could personalise the delivery of memories and digitise memory boxes where items are not there to build up the frames of someone’s life and people aren’t there to fill in the gaps.

There are many ‘dating site’ type services that match people and organisations. Volunteers to voluntary groups etc. How about a type of match between schools and residential homes? I know it’s something that’s sometimes done locally where I work and having spoken to both providers and some of the kids who go in, they seem to enjoy it and it can change and break expectations – each of the other.  I

We talk of social media a lot and often it is used to provide ‘recommendations’ to particular services through these databases. Perhaps more user and carer led general recommendations can be collated. Crowd source an ‘introduction’ to social services provisions by those currently using the service.

Ask ‘what do you wish you’d known?’ ‘what do you wish someone had told you?’ and while taking out all the obviously libellous stuff, a local authority must be brave enough to leave in the criticisms. We learn through complains and criticisms and it can take a lot of guts (or anger) to make a complaint or to criticism and that MUST be respected by the service and the individuals at fault and used as a means of improvement.

I don’t want to see local authorities ‘whitewash’ problems in order to gain sparkling OFSTED or CQC inspections. It sullies the whole process and makes the inspections worthless. Regulation should be less authoritarian and more about actually making improvements and making things better for the end user – not about allowing local authorities to produce the ‘right’ results while poor practice is brushed away from the sight of the inspectors.

But back to my point about using social media to crowdsource – it is important that social media ALONE is not used as an ‘answer’. Crowd sourcing must be honest but it must also be broader than putting out an ‘internet consultation’ and having a Twitter account or blog. There must be pounding of the streets too to engage those who are not able to use digital means to put their points across. There should be knocking at doors and face to face discussions – not leaflets, not inaccessible (for some) groups.

Talking about crowdsourcing though, there’s a much better and perhaps more obvious way it can be used and certainly isn’t being used at the moment and that’s to engage other social workers and professionals into putting together more information and useful methods of practice for ourselves. Sure, it needs time but we remain reliant on organisations to provide ‘guidance’ such as SCIE (who do provide fantastic resources) and BASW and the College of Social Work but why none of these organisations who purport to exist to help social work and social care practice actually engage more directly and use social media and open access blogs/discussion groups/forums/micro blogging etc to engage with currently practicing social workers is completely beyond me.

I’ve become very interested in open access education and resources and feel there is great scope for professional engagement and information to build its own resources and information together with users and carers, together with other professionals but there has to be a push for social workers to see the benefit of sharing and finding appropriate ways to share the information that we learn every day.

I have other ideas which will come in different posts  but I’d be interested in hearing other peoples’ ideas for uses of ‘technology’ in the very broadest sense and how they can develop to help the broadest range of people we see in social services – particularly those who are less able to look information up in various fancy online directories.

Initial thoughts on the Dilnot Report on Funding of Care and Support

Scheduling and exhaustion meant I didn’t have time to look at the Dilnot proposals in detail yesterday so this morning I have fired up my browser and am going to make a few initial comments on the baseline main recommendations and hopefully over the next few days can look at some of the details.

The Dilnot Report on Funding of Care and Support runs at 82 pages.  It attempts to forge a solution for the currently antiquated and inequitable system of care funding that is currently in place. Much talk has been made of the current threshold of £23,250 of assets, at which people currently become responsible for paying for their own care services but little made of the current discounting of homes in certain circumstances and the ability to raise a charge on a property to postpone payment of costs for care services. Nevertheless, this threshold was deemed as being too low. People who own houses like to keep houses for children. People don’t like those who ‘haven’t worked as hard’ or ‘saved as much’ getting something for free.

The system is broken though, don’t get me wrong, I just think the focus of the discussion has been too much around middle class fears of actually paying for something they believe should be free. Now, I’ve got that off my chest, back to the report.

The main recommendations are

- to cap lifetime costs of care between £25,000 and £100,000 – with a suggested threshold (which is used throughout the report for ease) of £35,000

- means-tested assistance will be extended to those who have between £23,250 and £100,000 of assets.

- Those who ‘enter adulthood’ with support needs will not be means-tested and care will be provided free.

-Universal disability benefits will continue but may be some differences in names regarding Attendance Allowance. (erm.. DLA?).

- There will be a cap on so-called ‘hotel costs’ in residential care between £7,000-£10,000

-There should be a national, portable eligibility framework which is more transparent.

- A government awareness campaign about planning ahead and preparing for potential age-related disabilities. And their costs.

- There should be a new information and advice strategy to help people through the confusing forest of knowledge.

- Better carers support and information.

- More health and social care integration

Of course, these recommendation run alongside the Law Commission’s report for changes in adult social care law. Together they could create a much better and clearer system than we currently have.

The ‘lifetime cap’ allows for insurance policies to be generated and probably very profitable ones too for the insurance companies. Most people do not need high level social care provision but the fear generated by the media is enough to drive right minded people into the arms (those who can afford it and who have substantial assets) into the arms of the insurance companies. I’m not sure how comfortable I am with the lifetime cap on care costs. It means the more wealth someone has, the more they are protected. I understand the logic behind it in that noone chooses ill-health and disability but the more than government spends on those who do have substantial assets, the less there is for those who cannot afford it and the higher the criteria to access support rises.

I just have a few queries which may be answered in the details. If Mrs Smith has a house worth £300,000 and she lives alone with no other substantial assets – say, for example, she has savings of £10,000 – is her house sold to release the asset worth up to the cap of £35,000 – assuming she doesn’t have an insurance policy? If she chooses to live in a care home which is private, but then the money runs out, will the local authority still move her? Will she ‘top up’ the local authority fees, paying above the ‘cap’ to do so? What is she lacks capacity and has no family?  I suspect all these answers are in the report but they will be questions I will be looking for.  The system of deferred payment is mentioned and I’ll hunt around for clarification.

The cap though, seems to be there to protect middle class votes.

I do, however wholly support the increase in the level of means-testing. I think it is entirely right to continue to means test up to £100,000 and I’d even go further than that. I don’t have a problem with mixed funding, I am just not entirely comfortable with the capping.

Again, the clarity of the coverage of those who ‘enter adulthood’ with care needs is entirely right. There is a necessary distinction between working age adults with care needs and older adults with care needs but quite rightly it is wrong to have a distinction fixed at a specific age. Indeed, Dilnot proposes that those who develop long term care needs before the age of 40 should continue to have a zero cap and costs should be met fully by the state. Above the age of 40 there will be some kind of tapering of the cap up to retirement age where the full proposed £35,000 cap would be reached.

Regarding the accessibility of universal disability benefits, Dilnot clarifies that he does not propose any reform that would lead to anyone losing their disability benefits and that attendance allowance will continue. I do wonder though how this ties in with the government plans to remove 20% of DLA claimants.

There are some recommendations though to change Attendance Allowance (AA). Firstly to change the name to something more understandable and an appreciation that many who are eligible for it do not claim it. That absolutely reflects my experience.  People who reach the cap when the government takes over payment will not continue to receive Attendance Allowance (or whatever it will be called) because the government is fully paying for their care needs – which makes sense to me.  The Personal Expenses Allowance (PEA) is proposed to continue – this is the payment that is made to people whose costs are met by the government in residential care and is currently about £23 pw – there is a suggestion that it should increase but not a recommendation.

The cap on hotel costs is excellent news in my view because I saw this as a potential ‘get out’ clause for residential homes. I do want to know how some of the private homes will adapt to these new systems though and what the cap will mean for overall quality of care provision.

The idea of clearer, portable assessments is a good one and long overdue. Eligibility criteria interpretation can differ wildly and there needs to be more transparency.   The minimum threshold would be applied at the ‘substantial’ level of care so I wonder how this portability will work for those who live in areas that meet lower levels at present.  It seems that there is some kind of recommendation to do away with FACS over the longer term.

Can’t be soon enough – a new assessment framework will be developed ‘with experts’. Please please please can front-line practitioners be involved in these developments – not just people who professionally develop policies and have never needed to use assessments in their lives. This is why we end up with unusable systems. There is also a way of building self-assessments into these new models. That’s the idea anyway.

The last recommendations about building awareness and improving quality of information seem to be sound all round. Nothing to argue about there.

I am interested in the recommendations as they relate to carers. As far as I am concerned, I want more than just an assessment for carers, I want the provision of more services. Supporting carers very well both financially and with practical and flexible support is probably the one aspect which can potentially save the government more money in the longer term than anything else – but more than that, it is an issue of ethics and morality. I know that doesn’t often come into government services but it’s something I feel very strongly about.

There is more commentary about the details of Dilnot in Community Care, the Guardian has extensive coverage (including an article I wrote before the details were known).

I also recommend Arbitrary Constant for links and discussion about Dilnot.

Mrs J and the Mystery Bristol Care Home (update – it’s Amerind Grove Nursing Home)

There is a story on the Community Care website this morning about an ombudsman’s report relating a woman, Mrs J, who was placed in a care home in Bristol.

Bristol waterfront at night

lovestruck@flickr
This was a  care home which was not only rated ‘poor’ or had no stars under the old rating system that doesn’t exist anymore but from the time she was placed in 2005 until Feb 2009 when she finally did move (only to die later that year) , the responsible council – Bristol City Council – did not monitor or review her placement adequately.

Her son, Mr P, asked for his mother to be moved however as the cost of the identified ‘replacement’ care home was higher than the cost that the local authority would pay, he had to make ‘top up’ payments.

The Care Home which strangely is not named in the report – and I find that rather suspicious to be honest, had had a number of safeguarding alerts over the period of Mrs J’s placement there. It had received a zero star rating and there had been a couple of ‘freezes on admissions’ – probably relating to the safeguarding alerts.

The council investigated and placed the responsibility entirely on the care home however the ombudsman found that the  council had failed Mrs J as it was the commissioner of the service

As the press release on the site of the Local Government Ombudsman says

The Ombudsman considers that there was maladministration in the Council’s reviewing and safeguarding strategy and is concerned about the poor communication between the Council and the family. The Ombudsman also finds that the Council had not properly considered the circumstances around Mrs J’s move to an alternative placement, which had led to Mr J contributing to the cost.

For the pain and suffering caused by the lack of appropriate safeguarding and review procedures, Bristol City Council were ordered to pay compensation to Mrs J of £6000 and to Mr J of £500 as well as pay back the contributions Mr J made towards his mother’s care between February 2009 and October 2009 when she died.

That’s the background and now my thoughts about this – deep breath.

It’s horrific. Firstly not everyone has family that are as determined as Mr J to pursue and stand up for residents in care homes. If Mrs J had not had a son, this poor practice and abusive situation may have continued with perhaps, some perfunctory safeguarding alerts but with little action in relation to the management of the care home taking place. The care home working in conjunction with the CSCI (predecessor to the CQC as inspection service) where people living in homes that are rated as poor (of course, they are not rated at all now – easy get out of this situation?) continue to do so without batting an eyelid as long as the fees are low enough to be met by the local authority.

Another thing – what about everyone else living in the same care home? Seriously. Were they moved as well?

Why is the name of the care home not given? Surely this information should be transparent. A government (and this not not just the present one but the previous one too – I am making no party political point here) which is bound to link choice to care decisions is finding it quite handy to mask the names of inadequate and frankly, dangerous, care homes.

I did a search of care homes in Bristol which had poor ratings at the time that the rating system was abolished in 2010 and there were none listed. Perhaps they had managed to haul one more star. These are the homes I found that had one star. It may well be none of these homes but it makes pretty depressing reading looking through inspection reports from ‘adequate’ care homes.

This raises a number of issues – mostly why on earth can’t family members and social workers making placements in residential homes know which home it was that failed so appallingly? Isn’t that how ‘markets’ work? Or is it through hiding behind reports which obfuscate and confuse and seem to dance around the real issues of care – in the long periods between when they appear.

Finally, a thought or two about the way the council were criticised and censured. £6500 will not deter a council from acting in the same way again. The cost of fully staffing/training a competent review team may be much much higher than that. Quality Assurance Teams in the councils are one of those ‘non-jobs’ or ‘back-office’ jobs that Pickles seems to like to mock but in the face of a national regulatory system that is little more than a joke, they could and would provide a great service to citizens who need placement – particularly those without strong advocates and family members to stand up for them.

We need these stories to have more publicity though because there needs to be a greater understanding of the challenges faced and the poor quality that has almost become tacitly acceptable in the ‘free market’ of care.

The imposition of the market economy into the care sector hasn’t allowed the cream to rise to the top for those who are wholly reliant on support for placement from local authorities. It has allowed care homes which charge low fees to thrive despite poor care provision because it suits both parties to allow them to continue and to allow their names to be protected.

This makes me angry. I did not come into social work to deliver what I consider to be poor care or poor care services. I want everyone to be able to access good quality care and support regardless of their income, savings, property values or their family or friends’ willingness and ability to advocate on their behalf.

In a world of rose-tinted spectacles through which the Care Minister seems to envisage that people like Mrs P will have more ‘choice and control’, we have to make sure that basic minimum standards of care are respected for everyone who is reliant on them.

And we aren’t.

UPDATE – BBC have published the name of the care home  - it is Amerind Grove Nursing Home owned and run by BUPA.   Mrs J is Mrs Iris Shipway.  This is the report from 2008 which gave Amerind Grove a 0 star rating.  It is a 171 bedded home. Stop and think about that for a while. 171 people in a care home. That’s big business. That’s not a ‘home’ – that’s warehousing. Would we place younger adults in 171-bedded units. Let alone poor 171 bedded units. And what about the other 170 people living there when Mrs Shipway’s treatment was so poor. Can we see how the large companies have local authority commissioners ‘over a barrel’? They would not be able to find alternative placements for that amount of people.

The answer is less institutionalisation – more creative thinking about alternatives to residential and nursing cares – the answer is not 171 bedded homes.

Rant over.

Human Rights, Home Care, Personal Budgets and Cost Saving

I read on the BBC website among others that there is a report suggesting that care provided in the home by local authorities to older adults may be overlooking human rights issues.

Old man exmouth market

Daniel2005@flickr

An inquiry into this  was initiated by the Equality and Human Rights Commission in November 2010 and will report in December 2011 but some interim findings have already been published.

I think the context in which the inquiry is taking place is crucial in times that Cameron trying to pretend that he invented the personalisation agenda and rebrand it as a version of ‘Big Society’.

The scope then of the Inquiry as to determine where the responsibility of the ‘public authority’ under the Human Rights Act actually lies and I’m going to quote directly from the EHRC (Equality and Human Rights Commission) as I think this is a crucially important point in the progress of personal budgets and home care provision (n.b. the underlining is my own).

The nature of social care is changing rapidly with a greater emphasis on personalised services and choice.  The majority of social care services are already delivered by private sector agencies, either via contract with local authorities or directly with individuals through a mix of public and private funding.

This complex web of transactions is combined with a narrow judicial interpretation of the meaning of ‘public authority’ under the Human Rights Act. This combination has created a confused picture concerning the duties and obligations of the various groups involved in respecting, protecting and promoting human rights.

Further, an increasing number of care transactions are likely to take place at the margins of, or even outside of, regulated care. There is the possibility that these transactions are beyond the present human rights obligations of the State.

We are also seeing the emergence of new on-line care marketing and brokerage services aimed at people purchasing social care with either ‘individual budgets’ or private funds. These marketing and brokering services are currently completely outside of the regulatory system with no means of monitoring the quality of the advice and services they offer. The Government wants to accelerate the pace of reform even further. While personalised care and support has many potential benefits, this is uncharted territory. There are concerns that human rights protection (and other issues) could fall between the gaps.

I’m going to come back, I’m afraid, to my perennial bugbear of people who lack capacity to make choices regarding care provisions and care delivery and wonder again how this group of people without family members, friends or advocates will be able to secure their own well-being in a world where responsibility of the state and the public authority is being discharged to private individuals. Will it become the responsibility of an advocacy service to determine that the support package and the provider of the support package are of a good quality? Or the carer/family member? Hardly the same as a protection under the Human Rights Act.

Food for thought and while I am extremely happy with the forward march of personal budgets and direct payments to those who are able and happy to manage their own budgets, the way that local authority managed budgets provide ‘more of the same’ regarding cheaply bought, block contracted social care remains floating fairly close to the edge regarding what is acceptable and what isn’t.

My fear is that the roll-out of personal budgets has not led to choice for all. It is a false choice and a false impression of the so-called ‘success’ of the roll-out. It has led to great benefits and more choice for some, yes, but I worry that this is actually at the expense of those without the louder voices to shout who have, again, been pushed to the bottom of the pile when quality services are being distributed.

So back to the reports findings so far.

Back to the BBC report

The Commission describes cases of people being left in bed for 17 hours, or more, between care visits and a failure to wash people regularly.

It received reports of people being left in filthy nightwear and bedding after a homecare visit, or without a wash or hair wash for several weeks.

Visits are sometimes so brief, the report says, that people have to choose between having a cooked meal or a wash.

The short visits also mean that staff have to rush tasks like washing and dressing, which frustrates elderly people and care staff

That doesn’t even bat an eyelid with me. This is what I have dealt with for the years I have been working in adult social care. Complaints and apologies about the time we can allocate for specific tasks due to budgets. Apologies on behalf of private agencies who have block contracts that cannot assure any kind of continuity of care.  That’s not even mentioning the  missed visits, the non-payment to staff of travel costs so they are cutting short visits in order to make it to the next ones. This is the reality of social care for older adults in the UK. Not the ‘season tickets to football matches’, not the ‘let me choose nice Mrs Walters’ daughter who I know from church to be my home carer’ kind of idyll that we are presented in the personalisation literature.

The reality for the people I work with and for is increasingly rushed visits and yes, choosing between a cooked meal (but only if it is a microwave meal because there is never ever time to cook a meal more complicated than tinned soup or beans on toast from ‘scratch’) and a shower.

The way to solve this problem and promote dignity is to increase and not reduce budgets for social care in the home. But budgets are being cut and cut hard.

Local authorities use block contacts with private care agencies to save money. The private care agencies generally pay staff at minimum wage. There are some fantastic carers and some fantastic agencies but they are penalised if they don’t offer their services at the very very lowest cost.

As for personal budgets? It is a wonderful reality for some but for most of the people I work with and for, it is a pipe-dream for people with a different kind of disability and with different kinds of support needs from the ones which are mostly promoted in our training programmes and in our policy documents.

If the government truly and genuinely means what it says about increasing and drawing out the personalisation agenda and increasing personal budgets delivered by direct payments there have to be ways clear and research undertaken to help us to create protective and interactive systems for people who are not at the forefront of the march because they don’t realise how much they are being penalised for not having a family member who is able to help with choosing and designing a care package and because they are not able to do this for themselves.

There has to be money spent on developing ways to allow those who at the moment are most at risk of vulnerability to be protected and cared for.

There are so many problems with a society that treats older adults or, in fact, anyone in the way that older people who are in need of care are treated currently. No-one wants to address it because no-one wants to pay. And it will cost.

No-one wants to lose their homes. No-one wants to lose their savings. No-one wants to pay higher taxes. No-one wants to lose weekly bin collections. No-one wants to pay insurance premiums.

The people who hold the reins of power will never be subjected to the humiliations which become a part of daily life for older adults who have need of support that is provided because they’ll be able to buy in their own ‘help’ privately.

Older people in need of assistance are less noisy than younger adults and less emotive than children in poverty and need. Ultimately we shouldn’t ration compassion and there’s no need for a choice to need to be made between one group or another

In the roll out of direct payments and then personalisation and personal budgets, it is the more able younger adults who have led the march and those who have been setting the policy and agenda seem to have completely forgotten the group of older people who don’t have involved family members and who  might not have the capacity to take decisions about care needs for themselves in the rush towards pushing the responsibility for support planning and choice of care routines. They  have forgotten amid the wonderful stories of attending football matches instead of day centres that some peoples’ reality is more about choosing a microwave meal or a shower.

Until those issues are addressed and the protection of the most potentially vulnerable groups of people is managed, the new system will not be equitable and it will not be fair. But perhaps that suits this government that wants shift responsibility from the state to the individual – which is fine to an extent but there are some people who really need that protection.

I look forward to the final report of the EHRC in December.

Safeguarding Adults Awareness Week

I learnt from my Twitter stream (thanks to Lindsay_Pike) that as well as being Carers’ Week, this week is also ‘Safeguarding Adults Awareness Week’.  I had never come across this as a ‘week’ before so used my carefully honed research skills to type ‘Safeguarding Adults Awareness Week’ into Google to see what it might be about.

There seem to be some local events arranged in Windsor, Kent and a nice sand sculpture in Cornwall as well as other places, it had certainly completely passed me by.

While the very scientific poll undertaken in Rotherham on the site of the councillor who was promoting it says that

76 % of the people surveyed were aware of safeguarding. A similar survey two weeks ago showed 54% recognition. The campaign of posters on the back of buses had been particularly successful.

I wonder if this ‘week’ though is truly ‘national’ and how important awareness is to identification and work to fight against abuse of adults who might be at risk of abuse.

There is a vast chasm between awareness of abuse towards adults and children – for me the division is arbitrary at best. Abuse of a person with knowledge/power/influence towards someone who lacks the ability – cognitive/physical or emotional to guard against it should be tackled regardless of the age of the so-called ‘victim’.

Why should society deal differently with the perpetrator according to the age of the person who is abused if the power differential is equivalent?

This is why I find the divisions and differences between the way that safeguarding is managed in childrens and adults services so different.

There are a lot of assumptions made though in the world of safeguarding. One is that anyone ‘old’ or anyone ‘disabled’ is automatically a s0-called ‘vulnerable’ adult. That isn’t necessarily the case.

But when someone who is at risk of being abused is – the responses from all parties can be patchy.

Perhaps that is why there is a differential in the way that safeguarding is investigated – the determination of being at risk is more straightforward with children because there are clear age boundaries to guide when an action is abuse and when it isn’t.

With adults, it is a value judgement about capacity and power relationships and that loaded word that I can’t quite find a perfect replacement for – vulnerability.

What makes one adult more vulnerable to abuse than another and is there a continuum of vulnerability that can cloud the way investigations are dealt with? In some situations it is brutally clear – Winterbourne View, for example, but when an historically abusive relationship between a husband who is physically violent towards his wife progresses as she develops dementia – at what point does it become an issue for social services to step in?

Between two ‘capacitious’ adults where there are no children involved, this would not be a situation for social services. With a progressive dementia or other vulnerability, it does.

For me, this is a very live issue as I work with a few people who have historically been in abusive relationships and when we intervene and when we are able to intervene becomes a very key judgement in a safeguarding investigation.

The key issues of human autonomy and human rights come into play in so many of the judgements we make regarding decisions of when and how to investigate safeguarding issues and what is and is not a safeguarding issue.

For me, I find I relate much more to the philosophical tenets of rights, responsibilities and ethics as I try and fit together the marginal decisions and the importance that an assessment of capacity can have on the life of another. The ability to reflect on the day to day decisions that might otherwise be taken speedily become more evident and more clear.

I can’t escape of the heavy moral responsibility that I feel in my day to day work. Every decision I make about prioritising, about capacity and in much clearer terms about hospital admissions weigh increasingly with the thought of implication, choice, rights and outcomes.

A thoughtless and unexamined practitioner is a dangerous practitioner.

Sometimes we can choose to overcomplicate and overanalyse but without consideration we can forget the power that we have.

So this week of Safeguarding has more or less passed me by but it is something that I’ll ponder on for much more than a week. I hope that next years’ week, if it exists, has some more thought and coherence behind it (and that it doesn’t coincide with Carers’ Week!).

Keeping Mum

I was sent information by a PR company about a book – Keeping Mum.

Keeping Mum: Caring for Someone with Dementia

I don’t usually respond to requests for information and advertising (and to be clear, this isn’t advertising as I haven’t been paid!) but I thought it might be a book that could be potentially interesting to people who might come across the site. I haven’t actually read the book yet and nor did I request a review copy – simply because I know I have such a backlog of books and lack of time at the moment but the information from the press release is as follows

“When Marianne Talbot’s mum was diagnosed with Alzheimer’s disease, Marianne found it impossible to put her mum into a care home. Instead Marianne cared for her mum in her own home for five years, whilst chronicling her experiences in a blog for three of those years.

The blog has now been published into a book called ‘Keeping Mum’. Heartwarmingly funny, frank and at times emotionally tearing, this book is a record of what it is like to care for a beloved parent whose mind is fragmenting. It is written for anyone, anywhere, who has anything to do with dementia or with caring.

The book also includes some great tips on daily living, managing others’ finances and the social care system. For more info please visit: http://www.keepingmum.org.uk/

Talbot’s blog can be found here and extracts from the book can be read here.

It has received excellent reviews on Amazon and I’m hoping that I will be able to find time to read it and review it properly but in the meantime, it seems to be worth checking out.

Are Beans more valuable than People? – Or A Day at Community Care Live 2011

Yesterday I went to the C0mmunity Care Live conference. It is an annual event put on by Community Care Magazine and runs across two days. Being one of the very few free events (and excellent – free isnt the ONLY reason I go but it does help!),  I’ve always made an effort to attend on one or other of the days and try and catch up on the workshop and debate programme that is put together about a very wide range of subjects relating to social care in the UK.

I went to a few workshops and my attempts at ‘live tweeting’ were scuppered initially when a colleague from work came to sit next to me in the first session.

It was a packed session run by the Mental Health Foundation about their Dementia Choices project and the title of the session was ‘Can personalisation and direct payment support work for people with dementia?’. There was an initial presentation about the research evidence and the project that the Mental Health Foundation had put together to pilot direct payments among adults with dementia  and then there was a talk from the daughter of a service user whose direct payments had changed her life.

I was a bit disappointed though. Not with the presentation and talks – they were very good and it was obviously something that was very deeply felt by those who have direct payments working for them but, in a sense, I felt that the speaker who first received direct payments for her mother in 2003 (I think – that’s from memory but it was a good few years ago) could have made the same speech about their use about 2 or 3 years ago before the move of the more widespread personalisation agenda. Her mother had been receiving direct payments for 8 years. What was ‘different’ then with this new push towards everyone receiving a direct payment?  I refer to my previous points about us knowing that direct payments can work incredibly well if there is an involved family to provide support for the person who may lack capacity but for the isolated older person who lacks capacity there is no ‘magic wand’ to make the systems that are over-complicated seem suddenly more empowering if there is no-one to take on the support planning role.

I’ve said this before and will again that I feel currently there is a two-tier service that we are providing where those with involved families and carers may receive the more individualised support plans simply because the additional time burdens of arranging support is placed on informal carers whereas those who do not have those networks receive exactly the same services as they always do – we just call it ‘managed personal budgets’.

The workshop instilled in me a kind of despair that this group of people that I work with a lot has again been sidelined in favour of the ‘easier’ groups. Where is the research with people who have greater cognitive impairments and who don’t have family members or carers who can or who are able to manage their support plans for them? Ah, a role for the voluntary sector perhaps? The problem is that the voluntary sector is also shrinking and someone needs to pay them so that a role for ‘support planning’ is likely to mean a lower personal budget.

Still, I know I should try and be more cheerful about it. It just seems that so much of the research time spent about personal budgets has been telling us things that we already knew about research that had taken place around marginalised groups regarding direct payments.

The second session I went to was about the need for media and social workers to work more closely together. Social Workers should not be afraid of the media and the media (and by that, the panel were referring particularly to main stream media – because that’s where the battles are to be won!) – should have a chance to engage more with social workers. The usual subjects of local authorities barring their employees from speaking to the press came up and hopefully the College of Social Work will be addressing this on a broader scale.

There are a lot of inaccuracies reported and it would be good to see more social workers able to contribute to debates about the work which we do to quell some of the misunderstandings.

I then went to session on Making Personalisation Work in an era of cuts. I almost didn’t go because I thought (wrongly, as it happened) that it would irritate me and that it would be people lecturing to us again how it is the intransigence of social workers which is holding up the forward march of social care.

It wasn’t that at all and for once, it really did sound like people were actually listening to what I wanted to say about the personalisation agenda and my fears for it. There is nothing at all I would like to do more than work in a person centred way regarding care and support planning. This is something I hope that I have always been doing since I qualified though. If it can be improved, it must be and I am more than willing to change every way I have of working in order to improve it but, and this was noted by the speakers, Peter Beresford and Miranda Wixon (of Think Local Act Personal) in some ways the government’s agenda of cuts has overtaken the meaning behind the ‘personalisation’ agenda.

Unfortunately, there has been a drive to try and deliver more for less and it is not only unrealistic, it can involve pushing people into making choices that they don’t necessarily want.

Beresford made the point that the government agenda is about pushing everyone onto direct payments as the ‘preferred method’ of delivering personal budgets but, he said, crucially – ‘preferred by whom’. Well, that would be the government.

There are more ways of delivering person centred planning and person centred support than providing the cash for someone to buy their own services and while it can work incredibly well for some people, there is the very real and often ignored or side-lined issue that it is not everyone’s choice to have that choice.

The excellent concept of personalisation and putting the primary role of designing support into the hands of the user of that support and the services is being lost to the marketisation agenda.

There was a speaker on the floor, in the question time who explained that the rate of pay for carers was lower than the rate of pay for employees in Tescos – asking, ‘Do we really value cans of beans over human life?’. It makes you ponder for a while – but there are vast issues about the undervaluing of care and support staff in our culture – not just through poor pay but through poor status. Surely the ‘heroes’ of our society should be the home carers and the support workers as much if not more than the professionals whom we traditionally hold in high esteem such as doctors – who, while performing fundamental roles are at least well-compensated for it.

Another speaker spoke about an issue that I am all too aware of where choice is actually reduced for service users as in-house local authority provided services are frozen out of the provider choice that has been given to users.

Can personalisation work then, in an era of cuts? We don’t have any choice. It will because the concept is a good one although the danger is that it has been completed hijacked by a government’s cost-cutting enterprise which will end up making social care delivery so restricted that it will barely exist in all but the most extreme situations.

It is not possible to detach ‘personalisation’ from ‘the era of cuts’ as local authorities have to divest themselves of many of their functions. I see a lot of third sector organisations and possibly private sector organisations moving into the support planning and assessment verifying and supporting roles. The money (when it comes) may come from the local authorities but they will not necessarily be involved in many of the intermediate processes. It may well be that some aspects of the work are far better done in other sectors. It will become far more usual for people to pay for their own care as the eligibility criteria rise – those who can afford it anyway – those who can’t afford it may well be waiting until they meet the critical bands of need before they receive support.

There will be a two-tier system of social care support. Those who can afford to meet their own ‘moderate/substantial’ care needs according to the Fair Access to Care Services and then shift to maybe receive some support from the local authorities as their needs increase – and those who can’t afford to meet their own moderate and/or substantial needs who will deteriorate more quickly and reach the ‘critical’ band which will qualify them for support quicker at the cost of their health and independence.

I am trying to think of a positive to end on. It was good to hear some of the concerns about the pushing out of the personalisation agenda are being heard. It was good to see groups of social workers who want to be engaged in the process of change.  I got a good supply of pens and although I wasn’t able to nab a mug, I did get a frisbee!

I almost forgot too, that the announcement of the memorandum of understanding between BASW and the College of Social Work – great news. Long overdue in my view!

Personally, I enjoyed being able to catch up with some people I’ve known a long time, others I’ve come across before and some I’d only ever met in a ‘virtual’ capacity – thanks to Shirley Ayres, the team at RiPfA and of course, the Community Care team as well as others who will remain nameless!

Personal Budgets in Practice

Recently, I’ve been working with a service user and his carer (daughter) to put together a  support plan or rather two support plans – one for him and one for his daughter . The two live together and without his daughter’s presence, there is no doubt at all that the man, G, would be in residential care so the personal budget is relatively substantial.  G has advanced dementia. His daughter who is a strong advocate for him and a devoted carer has given  up her job in order to care for her father. She receives carers allowance which is a pitiful £55.55. Think about that – for constant care (yes, she gets respite but that is sparse and shrinking).

As for creativity with G’s support plan, it isn’t particularly, because he has quite specific personal care needs and there is no scope for much creativity regarding tasks apart from the ability to potentially employ someone from outside the usual agencies.  Oh, we can choose the time and the ‘blocks of care’ but the type of care needed is specific so we can’t ‘skip a shower one day so there’s more time for a bath the next (seriously, that was suggested in one of the training sessions I attended!)’ as health reasons determine the need for regular visits. G’s support plan is, what we call a ‘managed personal budget’. That means that a virtual budget is assigned to G and I make the arrangements for agencies to cover the specified hours. I don’t get a choice of agencies. The agencies that are employed are those that have won ‘bidding’ contests with the local authority and are party to block contracts.

This ‘counts’ as a ‘personal budget’ for the purposes of the local authorities’ ‘figures’ even though the effect is exactly the same as it was prior to the ‘personalisation agenda’ – no, wait, there is a difference. I have three times the amount of paperwork to complete. Am I working in a more ‘person-centred’ way – well, I hope that I was ALWAYs involving service users and carers in care planning. That’s not to say that direct payments haven’t been enormously liberating and positive for a lot of service users. I absolutely don’t believe that everyone should have ‘managed’ personal budgets but it is a fallacy to believe the ‘hype’ that this personalisation agenda has brought the same benefits for all service users.

So we move to the idea that Burstow promotes that all support plans should be delivered by direct payments. We discussed delivering this package via direct payments, when I promoted even a slither of interest, I invited someone from our direct payments team round to meet the family (because they can ‘sell it’ better than me and can answer all the detailed questions about implementation and finances that sometimes I can’t) and we stalled. Why? Because G’s daughter felt genuinely stressed and frightened at the thought of employing someone directly – the agencies that accept the direct payments amounts are limited and don’t include her preferred agency and if she went with the preferred agency, her father would lose vital necessary hours of care.  She has little enough time to herself as it is and spending more time managing and planning her father’s care processes was something she felt that we should be doing.

Her father has very poor cognitive functioning to the extent that communication is very difficult.  The direct payment option, was, she saw, a way to push more stress onto her as a carer.

This is a reality that some of those who are implementing the wonderful new world of everyone receiving direct payments type personal budgets really have to address.

However I do have a more positive story to follow up on. That is that she, (M’s daughter) has a carer’s personal budget for herself which is delivered via a direct payment. While I won’t go into the details about what has been provided, you’ll have to trust me on this as I say we have been able to be incredibly ‘creative’ with the support planning of the carer’s personal budget and it will have an immediate positive effect on her quality of life. So all’s well that end’s well.

Generally, I have had a lot of success with carer’s personal budgets being implemented and I think that has been because the money provided (although not very much) is money in addition to the core care needs for the cared-for person.  There is a scope for more interesting ideas of things to use the money for.

It’s hard to see how more creativity can be instilled without more money and as long as the figures allow ‘managed’ personal budgets to be ‘counted’ we won’t have a real idea of how ‘ground-breaking’ these programmes are.

I don’t know the answers to these problems – I hope some of those consultants who are paid multiples of my salary and can spend all their days in discussions and consultations are able to come up with some genuinely practical responses rather than the usual ‘try harder/work harder/involve users (as if we don’t do all this already’.

Let’s see.

And on a final unrelated point, I saw a link to this blog yesterday on Twitter. It is written by the 18 year old son of someone with Alzheimer’s and I found it excellent and insightful.

Secret Courts

There has been a lot in the news about super-injections and hyper-injunctions with the Press attacking this most obscene threat on our (their) freedom of speech. Perhaps I’m too lackadaisical about our first amendment   rights to a free and open press or perhaps it is seeing the way that the press push in when it is their own issues that are at stake but to be honest, I don’t really care to know which TV celebrity or footballer is having an affair with which model/ex-big brother contestant.  I presume granting of the said injunctions relate to the protection of children in general being identified rather than the celebrities themselves (although knowing absolutely nothing about the legal processes, that is an assumption of mine so feel free to correct me!)

I think there has been a blurring of the lines and issues between the reporting of these kind of ‘kiss and tell’ mega-hyper-super injunctions and the type that have also been targeted in relation to Family Court and Court of Protection decisions and there needs to be a greater understanding and separation of the issues between the two types of cases. It is a separation that I have seen little appreciation, understanding and knowledge of in the press who seem to be lumping these ‘secret courts’ in with the other injunctions when in fact, the issues and the roles of protection of individuals’ identities are different.

I think there are issues about having more open judgements in the Court of Protection – the Court that deals with issues for people who lack capacity – not least because the decisions of that court relate directly to my practice when working with the Mental Capacity Act every day at work (which I do). Decisions can be made public without any need to necessarily name individuals. Names can be redacted. Sometimes they don’t help themselves. Although I have no experience of Family Courts, I presume the issues are similar regarding identification.

The problem is that without clear reporting of the facts of a case, those who feel wronged by the courts (rightly or wrongly) have free rein to use Facebook/Sympathetic MPs willing to break these injunctions through Parliamentary privilege to cast the details of the ‘travesty of the court’ in their own terms.

Yesterday, I did a little basic research on a name that came up in one of the discussions about a name that is subject to one of these ‘hyper-mega-super injunctions’ – a name that came out on the social networking sites. I’m not going to link any further information here because it’s all ‘out there’  and the details are not the issue but the sites that I found and the language that I found did not seem to amount to a reasoned and level-headed information source of what the truth might be. The language was very histrionic, there were no holds-barred relating to naming young children and making accusations that can never be more than unsubstantiated unless another party in the case chooses to ‘go public’.  That isn’t to say a major injustice might not have been done. It could have been  but it is hard to know without the details that the Court itself was privy to.

So the Courts remain ‘secret’.

Perhaps I have too much faith in the ‘system’? I can’t help but admit that my job relates to my views on this matter.  I’ve been  involved in a case that was open to major misinterpretation in the press because we could never ‘go public’ about the abusive family dynamics and circumstances which meant that they (the family) couldn’t ‘care for granny’. All that was apparent was ‘granny being ‘held’ as a ‘secret prisoner’ in a care home’.

I know that I run the risk of being too trusting of the Court processes and am the first to admit that mistakes can and are made – certainly social services departments are far from always right –  but I also know that there seems to be so little understanding and knowledge of the Deprivation of Liberty Safeguards the area of the ‘secret courts/secret prisoners’ that I do know reasonably well for me to be sceptical of any newspaper reporting of it.

Wrong decisions are made and social workers should not be above the scrutiny of the press but it is  hard to make judgements about the truth of the decisions being made when only part of the story is known is that of the ‘wronged party’.

Conversely I also know there is a lot of misunderstanding of the Deprivation of Liberty safeguards and defensiveness  within local authorities too but I’m not sure the pages of the press are the best places for these misunderstandings to be ironed out.

Better the Courts actually allow more redacted reporting, perhaps, so that some of the more complex issues that social services, social workers and ‘secret’ courts deal with can be understood.

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