Blog Archives

Care plans – Now and Future Me.

This morning I read a post by Mark Neary (whose blog I highly recommend) which highlights the hypocrisy and inaccessibility of the language of social care. I am used to jargon. I have been working in health and social care since 1993 so a lot of the language comes easy to me and I can almost forget what is jargon and what is usable by ‘normal’ people. It is posts like Marks that remind me of where our sector has lost its humanity. When we talk about ‘accessing the community’ rather than being a part of it as a part of a personal budget, we seem to have lost the idea of what community actually is.

 

Mark’s post got me thinking about how my life would be in the care and support plans I used to write so I’m going to imagine and put myself in that situation and see what my care plan would say. It’s not quite going to be ‘me me’. It’s going to be the me who, in 30/40 years time is living with a dementia which has affected my cognition. I’m in my 80s. I’m living alone and have no children. I’m a bit of a loner because I always have been and don’t have many friends living nearby.

Because someone in an office decides I may not be able to make decisions about what care I need, those decisions are made for me. I have a personal budget, of course, because everyone does. It isn’t a snazzy flexible one because I get confused by money and finances and am not sure I’d be able to make decisions about money management. I get my £5 and my £50 mixed up and that’s got me into all sorts of trouble at the local supermarkets. Sometimes some of the local lads offer to clear my garden. I give them £100 for an hour’s work because it seems fair to me and they are such nice lads. They always smile and they come every week. So my ‘personal budget’ is managed by the local authority.

 

Between 7.30am – 8am I have a carer to come and give me a shower or strip wash. The carer often doesn’t turn up until past 8.30am. I’ve always been an early riser so sometimes I try and get up and dressed within her help. I don’t like waiting till 8.30am when I’ve been up since 5am. I can’t manage the shower though and she thinks it’s a shame to change me after I’m already dressed.  “Carer to help with shower or strip wash”. Sometimes I’d like a bath. There isn’t enough money for that. That’s a shame. I last had a bath four years ago. I remember it sometimes.

 

I sit in the lounge. The carer sometimes puts the television on before she leaves. I don’t pay much attention to it. Because I’m over 65 now, I don’t get any ‘day opportunities’. The day centres have closed and I don’t have any family to visit. I sit and watch TV. It’s ok. I don’t want enforced company so I’m not so lonely. I miss going out to the shops though. Accessing the community? That would take too long and cost too much so I just have a carer come once every fortnight to do my shopping. I write out my shopping list in advance. Mostly it’s the same from week to week. I don’t do spontaneity anymore.

The carer comes at 12pm to make my lunch. Lunch is a tuna sandwich. Lunch is always a sandwich because there isn’t time to cook. It’s always tuna because I once mentioned I liked tuna 2 years ago. Now I have tuna sandwiches every day.

“carer to prepare light lunch and cup of tea. Clean up afterwards”. Sometimes I miss coffee.

 

It’s Thursday which is shopping day. Shopping day is only once a fortnight. So shopping is lots of instant meals which don’t need to be prepared. I wish I could go out sometimes and potter around in the supermarket. But that would take too long. You see, my allocated hour wouldn’t be enough because I’m a bit slower on my feet. It’s tins of spaghetti hoops. Bread for the freezer. Milk for the freezer. Chocolate hobnobs. Some cheese. Lots of tuna. I like all these things but sometimes I miss sushi.  “fortnightly local shop. Collect list. Leave change”.

 

It’s nice when it’s shopping day because it means something different happens. Mostly I just sit and watch TV. That’s my meaningful activity.  I have a personal budget. Look how well self-directed support works for people like me. What do you mean it’s no different? This is innovation. I know how much my care package costs now. That’s changed my world.

 

I can’t wait until dinner. At 5.30pm my carer comes and makes me something ‘light’. But this time it’s a hot meal. Spaghetti hoops on toast. I like that. Sometimes I put some cheese on the top but have to be careful with the toaster. I can’t manage it on my own. At least I get another cup of tea and help to the toilet. Sometimes I miss coffee.

“5.30pm – 6.15pm Prepare dinner – leave with cup of tea. Help to toilet if necessary”.

After dinner I watch TV for a while. Usually I fall asleep.

The carer wakes me up when she comes at 9pm to assist me to bed.

 

So that’s what the day looks like. I get up later at the weekend. That’s nice. But I like getting up early.

 

Now coming back to my present self, I wonder how my own care plan would look in the language of, as Mark calls it, ‘Carespeak’.

So snapping out of reality, this is my current ‘care plan’. I wake at about 5.30am and interact constructively with other household members, which is problematic to those who don’t want to be awake at 5.30am. This is evidence of my self-centred nature and need to mind my anti-social behaviours around waking early. Sometimes I don’t have breakfast. This presents a risk to my nutrition and hydration. Occasionally I might eat an unhealthy breakfast, like a croissant. This is high in fat and could lead to unhealthy habits and putting on weight which could affect my health.

I have a shower and this means that my needs related to hygiene are met. I ensure that I wear clean clothes which are appropriate to the season. Although sometimes I judge poorly before leaving the house and this means that I may not be protected from the risk of inclement weather. I don’t own an umbrella. This is a risk as it often rains in London. I am able to meet my personal care needs.

I go to work. Now, I’m accessing the community and engaging in a meaningful activity because I have economic worth. Although sometimes it isn’t meaningful. Sometimes it’s sitting in front of a screen staring at spreadsheets. It has economic value and therefore it is meaningful. Daytime activities, I have them, you see. All is good.

I might go out after work. This means I am socially active. I am engaging with my informal support network i.e people who are not paid to be with me. I can tick off my ‘social network’ tab on my care plan. I have friends.

When I get home, I should really clean the house a bit. But I sit on the sofa and fall asleep in front of the TV. This is a risk. This means that I have not been able to meet my domestic care needs. The washing up is in the sink. I am, therefore, in a house, where there is a concern that I am not managing domestic care sufficiently. This worries those people who write care plans. All is not well.

I go to bed at a reasonable time. I don’t have any problems with sleeping and am not worried or concerned by my lack of sleep. All is well.

 

So why is it worth considering? These two care plans say different things but in the same way. We can look at aspirational documentation and what we should strive for. I always want to strive for better. But those who are striving, don’t forget the people like me or the future me. Don’t get carried away with the language that can actually mean less than it should. A personal budget does not mean choice. Choice does not mean choice as often as not. If we want to solve problems, we have to know the problems and how they would affect us.

 

It’s worth considering how are lives are and how they would be in the context of ‘care planning’. Would we plan care for others, the way we would want it planned ourselves? And if not, why not?  Food for thought.

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.

Personal Budgets, Personalisation, Thoughts and Hopes

Yesterday Think Local Act Personal (TLAP) published the results of a National Personal Budget Survey.

The headline ‘results’ are of course overwhelmingly positive. Personal Budgets work. Direct Payments Are Good. Everyone is happy.
Questionnaire

jrambow@flickr

Is any of this a surprise though? We know that people who can and are able to manage (or have family members to help them to manage) personal budgets delivered through direct payments (where money is paid directly to users) prefer them to less flexible local authority provided care packages – particularly when the scope of local authority care packages is limited to agencies with block contract arrangements.

In Control – which publishes the survey – highlights the following ‘implications’ from the findings. The bold is a direct quote and the italics are mine.

Other implications that can be drawn from the survey results include:

  • Personal budgets work better for older people than you might expect and direct payments work just as well for older people as everyone else.

Who said we were not expecting personal budgets to work for older people? Does this make an ageist assumption and lump together all ‘older people’. Of COURSE they work as well for people who are 65 as they do for people who are 64 but what about people without capacity or who don’t have family or friends involved? What about a more subtle distinction between 65 year olds and 85 year olds rather than a blanket ‘old people’ response.

  • The processes used for delivering personal budgets are more difficult than they need to be and that impacts badly on carers and on personal budget recipients.

Did this seriously need a survey over three months to discover? You could have asked me three years ago and I wouldn’t have charged consultancy fees.

  • More work needs to be done to make direct payments more accessible generally but especially to older people.

This could have been written 6 years ago. We KNEW this from the roll-out of direct payments initially so why was NO WORK WHATSOEVER done around trying to work with more difficult to reach groups when personal budgets were being ‘piloted’. I really can say ‘I told you so’ as I begged our Personal Budgets roll-out team to allow us to pilot or be involved in the initial processes and they said our user group was ‘too complicated’. Heh.

  • There is a need to simplify and clarify the rules and regulations surrounding personal budgets.

So those are the ‘implications’ and forgive me my cynicism. I love the idea of personalisation. I want it to work. I want to work in more creative ways or outsource my work if necessary to other third sector organisations but this is not ‘different’. This is not ‘new’. I fail to see the value of reports and surveys that tell us exactly what we already know again, and again and again instead of actively trying to work with people who actually understand and know what is happening ‘at the sharp end’ to try and work out ways to improve outcomes for those who are not receiving direct payments currently.

So back to the report – which used a Personal Budget Outcomes Evaluation Tool (POET)

in total, 1,114 personal budget holders  completed the POET survey, including 832 returns from the 10 local authority demonstrator sites and returns from at least 76 other local authorities. 417 of these personal budget holders also wrote in a comment about their experience of personal budgets.
In total, 950 carers completed the POET survey,including 782 returns from carers in the 10 local authority demonstrator sites and returns from at least 66 other local authorities. 434 of these carers also wrote in a comment about the impact of personal budgets on their own lives

And

Almost half of people responding to the survey were aged 65 years or more (43%); the social care needs of working age adults (aged 16-64 years) were largely split between learning disabilities (17%), mental health needs (8%) and physical disabilities (25%).

I don’t want to play too many games with statistics but it would be interesting to know what proportion of people who meet the FACS criteria in total are over 65 and whether 43% is a proportionate figure in relation to total recipients of social care services. I think as well, to class ‘older adults’ as ‘over 65s’ is a little disingenuous although I know it is done because that is the basis on which statistics are given but it shows some of the ways that systems restrict and inhibit knowledge. It would be far more interesting to know the differences of take up of personal budgets between 65 year olds as opposed to 85 year olds for example.

And to some of the headline figures, that can catch the press attention – most people who receive personal budgets find there is a ‘positive effect’.

Looking through some of the figures, it seems that older people were much more likely to be receiving council managed budgets – you know, that ‘easy’ way of just switching around a bit of paperwork and making it look like there is now more ‘choice’ when in fact, the services and delivery is almost exactly as it was before the ‘change’.

As for the outcomes the report says

In terms of social care need groups, older adults tend to report less positive outcomes than other social care need groups in six out
of the 14 outcome domains

I find the report to be honest, a bit of a whitewash in itself. It is only accentuating the positives and like all discourse related to personalisation and personal budgets, seems to be going over all the same ground again and again.

People like choice, people like flexibility. Yes, and rabbits like to eat carrots. It doesn’t need a survey to tell me that. What action and money and research needs to be concentrated on is the HOW.

HOW is there going to be an improvement in service delivery to those who are marginalised in this process.

HOW are we going to wriggle out of the sham that is council-managed budgets while allowing those who need to have others to manage their budget and support their care to have the same access to quality care and personal assistants that those who are able to choose and decide have.

I’m rapidly coming round to the view that personal budget support planning needs to be moved out of the hands of local authorities who currently have no interest in the process except for meeting the government targets. Where is the innovation within local government for change? Sure there are people, and I hope to be able to count myself among them, who want to do a better job and provide a better service but the constraints of the type of job I am doing means that I can’t devote the time necessary to truly inclusive and supportive care planning so Mr G whose support plan I am writing up (he doesn’t want to be involved in the process as he ‘doesn’t like forms’ and can generally only tolerate conversations with people for between 5-10 mins maximum and that’s only if he’s known you for at least a year) does get a rushed service because I have to carry out Best Interests Assessments, do Mental Health Act Assessments,  complete reviews and CPAs, liaise with other professionals, arrange discharges from hospital for other people. Yes, it’s a little bit of wallowing in self-pity and I wholly accept that. We are all busy but local authorities have no idea if they want a quality support plan without changing the ways of working in any other respect. Where is the time to devote to Mr G’s creative support plan? Oh, well, we’ll just do a regular care plan and a managed budget. Should it be that way? How has the march towards personalisation helped people like Mr G? Mr G wouldn’t complete a survey about a personal budget even if he did get a letter. Letters worry him and he doesn’t have a phone. I don’t want the Mr G’s that I work with to be forgotten in the rush towards direct payments.

When I first attended training we were told that any additional time we might be spending in our day to day work on these awful process-driven systems would be made up by the amount of time we would save by people completing their own support plans and assessments without any assistance. That may work for some people and I hope it does but for most of the people in the team in which I work it is unfeasible due to the amount of people I work with who have high support needs and who don’t have the capacity to make decisions about their own care needs.

The survey angered me, in a way that is probably irrational. Partly because it seemed to have taught us nothing at all. And partly because again, I see no new thoughts and ideas about developing systems that will be truly inclusive.

HOW can social care improve for everyone. That’s everyone. Even those who don’t want direct payments. Even those who don’t have advocates. Even those who are self-funding their own care packages as the criteria for receiving government support rise higher.

Those are the questions I want Think Local Act Personal to answer.

I have my own ideas. I think there will be a movement to roles for professional ‘support plan advisors’ who aren’t necessarily based in the local authority – perhaps individual social work consultancies but there has to be a separation between planning and delivery and the cost of these services shouldn’t need to be met out of the personal budget itself.

First and above all, there has to be a consistency and a transparency in the way resources are allocated and if necessary a weighting towards people who need assistance to access the same kinds of services who have been excluded from the process and the benefits in the past.

A survey of the skills-base of professionals who do implement support plans needs to be undertaken to establish what is needed and what is important to have.

Maybe it is a professional type qualification or maybe not. There is not much discussion about what the role of the social worker should be in the process. Should we be the ones support planning? I think there’s a argument that a social worker is well-placed to look at building plans together in conjunction with a user and family member if necessary and setting up things like trust funds or managed local authority budgets but only if the social worker is removed from the local authority talons.  Maybe some kind of team of people with different kinds of experience and expertise working together with some background and training in non-directive advocacy for people who do lack the capacity to organise their own support plans. Perhaps the social worker or support worker in these new roles could have longer term relationships with the users and carers and wouldn’t feel so pressured by management if freed from the local authority reins.

But who is going to suggest and discuss the new ideas? Where do they go? Who will collate them?

While I see lots of discussions around me about personalisation, I see little that says anything other than it HAS to work because it is best for ‘people’.

I genuinely believe that is has potential to deliver a much better system but and this is a big but, there has to be more creativity and different kind of research that looks at new models and methods of delivery and consults people – yes, like me – who while being critical really really do want things to work better.

My criticism isn’t because I want to bury my head in the sand and ‘retain the reins of control’. I really don’t. I want to relinquish control but I want more than anything an equitable system that doesn’t fob off ‘more difficult’ service users with a second class service.

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.

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.

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.

Personalisation in Mental Health and Older Adult Services

Personalisation is a very broad brush term to describe the so-called ‘transformation’ agenda in adult social care. In very general terms it refers to the process of moving from resource-led to needs-led systems of service provision (just as the NHS and Community Care Act 1990 was supposed to do) but this time… with individual budgets.

The idea is one is it difficult to find fault with. Users and carers would have more control in choosing the type of care which was provided through having ‘pots of money’ either virtual or actual payments  and deciding how best they could be used.

The change was led, ironically, by the soon to be extinct ILF (Independent Living Fund) which was the forerunner of the Direct Payment system whereby money was put directly into the hands of service users to choose and buy their own support and hire their own carers (with substantial support regarding admin and regulation if necessary). It was a new way of doing things and it generally worked very well.

Then with the ‘Putting People First’ white paper, the idea was to be rolled out to everyone receiving a package of care from the local authority. Wonderful. We would be living in a world where patronising social workers wouldn’t be dictating that ‘they knew best’ and imposing care packages based on large scale contracts negotiated down to reduce the costs and people would be able to choose the services they wanted and the carers they needed and liked. It would all end happily ever after.

I was a great campaigner for direct payments. I saw a lot of people do extremely well from them. I also think a lot more needed to be done though in increasing the take up and levelling the parity of service provision.

It appeared to me that those best able to advocate for themselves or who had active and involved families got the lions’ share of the services and were able to cherry pick whereas those who weren’t able to access the best systems either though lacking mental capacity, through lacking the desire or just being so knocked out by disability/age or lack of family got the scraps left behind by the system. The contracts that had been negotiated by commissioners who never themselves would actually use the services of minimum wage carers who were overworked by the care agencies determined to slash costs in order to win these prized contracts.

Soon though, the announcement came that everyone would get ‘personal budgets’ for social care. Wonderful. That would level the playing field, surely.

It was quite exciting. For a time. Until we realised that the people the local authority were ‘piloting’ the system with where exactly the people that they knew the system would work with – namely those who had successful direct payments packages.

Now, in my time, and the only time I’ve done properly authorised and supervised research as a practitioner, so happened to be related to direct payments. I spent a few months researching the lack of take up of direct payments by older adults and adults with mental health needs.

Now, my research was primarily literature-based. I did no direct interviews (ethics committees take time!). There was substantial sources of literature available, even at that point.

So what was learnt from the research that had taken place at that time and how was this used to improve the service provision when personal budgets were rolled out?

It wasn’t. So we find ourselves in the same place years later.

That’s a very long background to my point this morning but I think it’s important to emphasise the context through which I read the SCIE report ‘Keeping Personal Budgets Personal : Learning from the experiences of older people, people with mental health problems and their carers’.

I read this report last week and as is the case in all the best research, it backed up, with evidence my own feelings and ‘hunches’. I like research that does that.

The main learning from the report is that the key to the implementation of a successful personal budget is both information and involvement of a professional. People wanted support with completing self-assessment questionnaires in general so while our local authority employers promised us (don’t worry, we never believed them for a second) that time saved in leaving people to complete their own self-assessment questionnaires is time we could use in ‘creative support planning’ actually, the SAQ can be a daunting document.

In my experience, it is extremely poorly drafted (possibly because the focus groups were very narrow) and I am almost embarrassed to give it out. It focussed heavily on physical care needs and asked particularly strangely worded questions about capacity which shows the author of the forms have no understanding of the Mental Capacity Act and the idea of ‘decision-specific capacity’. It reminds me (and service users I’ve taken it to) of a DLA form. Jumping through hoops and ticking boxes to get money is not dignified.

The SCIE research also emphasises the importance of having a consistent person available to take a user through the process. Again, less necessary when there is a someone who is high functioning or who has highly involvement family/carers but the resource distribution of support doesn’t create an equity for those who need more. Professional time is increasingly stretched and the time spent rushing through a SAQ and package of support is not respecting the principle of self-directed support. As professionals with heavy caseloads though and targets which are tracked and time-limited, it is hard to balance this ethically.

Moving onto the Resource Allocation Systems (RAS) which is the way that the self-assessment ‘turns into’ a sum of money – either real or virtual for the user to ‘spend onservices’. I can’t express my anger about the RAS system strongly enough. It is heavily biased against older adults. It is even more heavily biased against people who have carer support.  I don;t know how widely this information is known  but if you have a family member providing support, you suffer massively when the finances are pumped out of the ‘RAS system’. The more help the family member provides, the less money comes out. I feel this is immoral and short-sighted. It places additional stress on unpaid carers and pays no heed to preventative care.    Yes, individual cases can be argued but that takes more time and effort.

The we move to the support planning stage. You have the ‘virtual budget’ in  hand so what amazingly creative package of care can you create. Again, the evidence in the report shows that it is often information that is shared by the professional in the first place that leads to the quality of support planning.  Users wanted continuity of staff throughout the whole process of assessing and support planning so our local authorities great idea of commissioning organisations to help might miss this point – although that idea and those commissions fell through when the organisations they had commissioned were so overwhelmed with referrals they were unable to take on any more users. Oh, and the user groups that were commissioned? Physical and learning disabilities charities. Nothing for mental health or older adults. Surprise. Even though those were the groups least likely to get the support and planning needed.

There is so much in this report and it is worth reading if you are involved in any way in implementing personalisation in adult social care in the UK.

The sadly predictable thing is that I could have told the councils these messages 5 years ago but noone would have listened – come to think of it, I DID tell the implementation team 5 years ago and many times in between. They are so vested in this new system of delivery of services being ‘better’ that they are blinded to the vast swathes of people who are again increasingly sidelined and excluded from the positive thrust of the personalisation agenda.

Sadly, it feels like the lessons will never be learnt because the wrong people are being asked. No-one wants or is able to invest real money in providing better services and more flexible and easier ways of managing the service provision in the less engaging client groups.

It’s unfortunate that the agenda has sprung into life at a time when cuts are at the front of our communal minds. It has become too easy to see personal budgets and cuts in the same sentence when they were never meant to be.

The truth is that the whole system is failing those who need the support, advocacy and choice the most. You know, those elderly people with dementia who have care staff on minimum wage coming for 30 mins in the morning to give them a shower. There are lots and lots of them around.

I want to ask how is the personalisation agenda helping THEM? How is it helping us to help them? We are closing day centres because people can ‘group together and commission day services jointly’  but sometimes the purpose of a day centre is the company that you surround yourself with, the support of peers and not about completing a specific task or learning a specific skill.

More able, more active older adults may well use their ‘day services’ budget to go to the local bridge club or swimming pool – but how about those with advancing dementia whose carers need the respite that day services bring as much as the company and hot meal are welcomed by users. Are the local swimming pools and adult education colleges going to be suitable for all?

The idea of personalisation was the it would be something that would be actively chosen and engaged with and there is no doubt, it works very well for those who are actively interested and engage with their care services.

My concern is that the process has, again, run away with itself and left behind, far behind, those who cannot make decisions for themselves about their own needs and who don’t have family to advocate for them. They are left with the same ‘old style’ service delivery model of the cheapest agencies providing poor quality care by rushed carers on minimum wage. The difference is now the day centres are closing and the government are telling us this system works better.

The sad thing is, if they had read and understood the research that was available at the time regarding the take up of direct payments by adults with mental health problems and older adults, they would have learnt all these lessons and maybe put better systems in place. The cynic in me says they only wanted to see success and the same groups of service users suffer yet again.

One of the things that saddens me the most on a personal level, is that I was always a great advocate of the direct payment system. I plugged away with it and got some incredible results with specific service users.  I was the little pet of the direct payments team, explaining again and again to my colleagues who wonderful it was to be able to reliquish control and allow and promote user choice.

I wanted and was sure the system of personal budgets would be even better. It would be more inclusive. It would fix the faults of the direct payments system because, look, we had research to back up why it  hadn’t worked so well with these particular service groups (older adults and people with mental health problems).

All the research was ignored. Mistakes were replicated and exacerbated. If anything it is even more exclusive and inequitable than the previous system and no-one seems interested in listening to any of the real concerns and criticisms.

A great opportunity has been missed. Hopefully someone somewhere will actually read the SCIE research paper and think about making real changes in the systems of delivery and implementation. It could all have been done in advance though and that’s the true tragedy of the personalisation agenda.

A Vision for Adult Care – a few brief thoughts

I’ve only just had a chance to read the ‘Vision for Adult Care’ published yesterday and wanted to offer a view very initial thoughts although I haven’t any doubt that it will be referred to continually for many years to come.

Having read it my initial response was a little underwhelmed. I don’t know what I was expecting. Perhaps that was just it really, we knew exactly what to expect. There wasn’t anything in there that should surprise anyone at all.

We know that there needs and will be a genuine desire to push the personalisation agenda and move towards personal budgets where service users and carers have greater control over the budgets that they are assessed to need with services rather than directly provided and commissioned services being chosen ‘on their behalf’.

I have always attempted to care plan with rather than for people. That has been the policy for about 20 years arguably since the 1990 NHS and Community Care Act. What stymied the ‘choice’ element back then was the realisation that services have costs attached and ‘block contracts’ are cheaper and provide more services are cheaper costs to the councils. My understanding is that block contracted care with little choice in the provider was never the goal of the reform to legislation 20 years ago. That was supposed to, and did, open up the ‘social care’ market. It has just led us down this prescriptive path because the prescriptive path was cheaper than the choice and user-led path.

That should be the lesson for the government of the day – but enough with my cynicism.

I can wholly embrace the desire to move everyone to personal budgets and moreover, I absolutely welcome and appreciate the acknowledgement that having a personal budget is not the same as having a direct payment.

The language of social care seems almost designed in some ways to alienate and obfuscate so I apologise in my use of jargon.

Managed personal budgets seem to be a way that some local authorities have ‘dodged the issue’ of blocks to direct payments or when people have been reluctant/unwilling to move to direct payments. The government seems to have made, at least an attempt to understand this.

As the document says

We want people to have the freedomm to choose the services that are right for them from a vibrant plural market. That is why this vision challenges councils to provide personal budgets, preferably as direct payments to everyone eligible within social care within the next two years’

That ‘preferably’ offers the councils some get out within the target of ‘two years’ but it will be interesting to see what outcome measures (because there will be new outcome measures) are going to be taken up in my council, at least and what kinds of pressures and supports will be rolled out for that broader ‘direct payments’ issue.

I wonder how many people accept and understand that these ‘direct payments’ and ‘personal budgets’ are all means-tested and can all be charged. I mention that because sometimes in the press there doesn’t seem a complete appreciation of that. I say that as someone who has recently assisted to set up a direct payment personal budget to someone who is paying full cost. He is paying as much as he is getting back. Sounds nonsensical? Not really, because this way he is able to ‘buy’ into the support package and information that is given in the same way it is to those who don’t pay for their own support. Apparently, according to the government though, we don’t provide the same levels of support for full cost users, that is also rolled out as a goal for the future. I wholeheartedly welcome that. Access to support, information and care planning should and will be a universal service. I’ve always believed it is inherently unfair that people who are charged full-cost have sometimes been denied that support – indeed, I have personally provided it and argued successfully with my managers that I should wherever it has been possible but I am aware that too often the local authority has washed it’s hands of anything that it does not have a direct responsibility for – mostly due to cost rather than callousness. But back to the ‘vision’..

The paper sets out a number of principles

Prevention

‘empowered people and strong communities will work together to maintain independence’

Wonderful. No-one can deny statements like that. The vision specifically explains (quite rightly) that early intervention promotes better outcomes (and lower costs) in the longer term. This is what we have been saying for years – as the eligibility criteria have increasingly tightened. Therein lies the so-called rub. The way the ‘vision’ ducks this is by emphasising community support and action alongside paid care services. The ‘Big Society approach to social care’. Gulp. I honestly still find it difficult to understand ‘big society’. Does it mean more people doing voluntary and community work? I am sceptical even though I don’t want to be. My concern is that it means a greater pressure on family and friends as carers.  The vision mentions the ‘scheme’ in Japan where families ‘swap’ care responsibilities in different areas of the country. I worry that too great a reliance on informal and ‘free’ support will lead to un inequitable access to equivalent services for people that don’t have large support networks or live in supportive communities. Time Banks are also suggested as a way of providing support which is good, I like the idea but too great a reliance on hours given willingly may not be the best safety net.

I absolutely agree that commissioning needs to be closer to the ground. I see some of the craziest commissioning decisions being made and can’t believe anyone in those service areas have any clue about what  the local community needs or wants.

The vision does state clearly that ‘Carers are the first line of prevention’. Good. And it goes on to explain ‘Councils should recognise the value of offering a range of personalised support for carers to help prevent the escalation of needs that fall on statutory services’.

I have set up a lot of carers’ direct payments myself and have a few carers who manage them. In some ways, it is very easy to ‘sell’ direct payments to carers as there is a much greater degree of flexibility but there is actually very little money allocated to carers’ direct payments presently. I hope this ‘vision’ and appreciation of the longer term saving that carers are contributing that we will be able to offer them more money through direct payments themselves. Carers Allowance is some kind of evil joke that is, in my view, insulting. Carers Direct Payments potentially can ‘make up’ for it but the local authorities have to loosen the poor upper limits on the carers’ direct payments.

We are promised a forthcoming carers’ strategy. I await it will much interest.

Telecare and technology is also mentioned. We have been promoting this for a few years. It can be very successful but it cannot replace human contact.

Personalisation

I’ve mentioned this above and am very glad that the document acknowledges that ‘A personal budget alone does not in itself mean that services are automatically personalised’. In some ways, that has been my cry in what I thought was the dark. The document mentions the areas that have been slow to pick up in the roll out of direct payments, namely older adults, adults with mental health problems, adults with learning disabilities and adults who lack capacity.  Regarding one of the ideas for managing direct payments for people who lack capacity, one of the suggested ‘solutions’ is placing the control of the budget in the hands of ‘another suitable person’. Interesting. I wonder what this means – informal care and support, a trust fund type project, a professional. All have potential costs and as the criteria for eligibility tighten, the money itself will be less. Higher quality care and m0re choice with less money. Sounds perfect.

There aren’t really any solutions offered but at least acknowledging some of the difficulties is a start.

Interestingly, there is a line about increasing choice to people living in residential care which is a fantastic idea. I am very curious and excited to see how this might happen in practice.

Again, the examples offered in the Vision relate to people that have capacity, support and ideas.

There also seemed to be a suggestion that the IMCA (Indepedent Mental Capacity Advocate) role might be broadened. This is a joy to my cynical self. I  have worked extensively with our local IMCA service and I couldn’t praise them highly enough. I really really hope we can use them more but they will need to be paid.

Plurality and Partnership

The vision emphasises an idealised support ‘partnership’ between individuals, communities, voluntary sector, private sector, NHS and local councils. Probably in that order of preference.

We are told the aim is ‘a broad market of high quality service providers’. Absolutely fantastic. This is my vision for social care as well. I am just a little cynical about the high quality=low cost possibilities but I am willing to be proved wrong, indeed, nothing in the world would make me happier. I want to be able to advise and promote high quality care from many different providers. But that was what we were promised 20 years ago.  The vision promotes a move away from the ‘block contracts’, again, personally, I feel in general they have been negative and have limited choice but there has to be an acknowledgement that they grew out of a necessity to reduce costs.

Protection

Safeguarding concerns have often been raised about the roll out of direct payments and a potentially larger, unregulated workforce of Personal Assistants as well as issues regarding management of finances.

The vision seems to have a great deal of faith in CQC (Care Quality Commission) to inspect services where safeguarding concerns have been raised. Anyone else notice the slight problem here? That’s a bit like closing the door after the horse has bolted – I apologise for the cliche.

There is also the suggestion of a type of ‘neighbourhood watch’ scheme for people in communities to ‘report’ and ‘look out for’ people who might be being subject to abuse. Honestly, I hope this is happening anyway. Fine, it doesn’t do any harm but it doesn’t replace a strong safeguarding structure and culture. I noted there is a particular statement that

‘Local government should act as the champion of safeguarding within communities’ which suggests  that whatever the new ‘practices’ outside the local authorities will do, it won’t be safeguarding. There is a consideration to put this function on a statutory basis. Please, please, yes, yes. Vulnerable adults need the same protections as vulnerable children. This is long overdue and a real failing of the current safeguarding system that at times feels too toothless. It is very hard to get police involved sometimes where I can’t imagine there would be the same difficulties if we were talking about children rather than adults.

Productivity

The vision goes into greater detail about the financial package the local authorities and social care has been ‘gifted’. So be it. It is unprotected money and we all have doubts as to whether it will be enough but noone is getting any money at the moment. There is a focus on efficiency savings.

One of the elements that made me happiest actually is hidden towards the back of the document where it states that ‘The Department of Health will amend the ‘Payment by Results’ tariff from April 2012 so that the NHS pays for reablement and other post-discharge services for 30 days after a patient leaves hospital. From next April, Trusts will not be reimbursed for unnecessary readmissions to hospital’.

Hopefully, this will mean that discharge planning is more coherent and less rushed with the Trusts knowing there will be cost implications of readmission if they ‘get it wrong’. Good.

On the other hand, the vision wants councils to rip apart any remaining in-house services. I understand their point that this is potentially narrowing choice but often, certainly everywhere I have worked, it has been the best quality service when compared with private sector care services. This makes me sad. Goodbye, in-house support. I miss you before you have even gone.

People

And so we move to the social care workforce. Sigh. Yes, the government say ‘care workers, nurses, occupational therapists, physiotherapists and social workers, along with carers and the people who use the services’ and you get the impression they put the list in order to importance in their own minds’ eye.

The vision explains that

‘New and continuing professional roles will be developed for front-line social workers, occupational therapists, nurses and others’.

And then goes on to explain the problems there are with sickness and absence in the sector. I wonder if all the reconfigurations have been an issue about increased stress and uncertainty, never mind. I’m sure the government hadn’t considered that.

Interestingly there is mention of working with Munro’s review of children’s services in social work to allow social workers to have more ‘decision-making authority’. Huh? I thought the decision-making was to lie with the service users.

I am thrilled that there seems to be a linking of social work with community development. Seriously. I think this is absolutely the best area for adult social work to place itself and I am genuinely excited to think there could be a role for social workers in community-based growth. However, the skills sets may not quite be there and there will need to be some additional support given at first.

Generally, it’s a mixed bag that tells about lots of hope and plans as expected in a vision. There isn’t much suggestion or explanation yet but that will come with time. Some elements are clearer, some even foggier than they were before and my brief thoughts have been less brief than I imagined.

I find it very hard not to be cynical and I find it very hard to trust this government to be honest. There seems to be a worryingly high dependence on ‘free’ care provided by family and community and no explanation of where the support will come from when these community supports don’t exist.

But I do want the system to be better. I want everyone to receive a better service, not just those who are able to actively engage with the process of receiving a direct payment and I want the changes to work. I don’t care much for the government but I do care desperately for the sector.

A vision is nothing more than a promise until it delivers though. I want the central government, a government without  a mandate, to deliver on outcomes and promises as well as local government officers.

And with that, I sign off the longest post I have ever written for this blog – thanks for staying till the end (if you did). It terrifies me that the word count for one post I wrote in 40 mins is the same as the word count for the essay (currently taking a PQ module) that has taken me about 4 weeks to write… .. . . .

Follow

Get every new post delivered to your Inbox.

Join 385 other followers

%d bloggers like this: