Personalisation in Practice

(Note – I wrote this for something else where it was not used but thought, I’ve put the work in and might as well see if anyone else finds it useful/interesting! That’s why it’s a slightly different style from my usual rants and definitely drier#.. and why there’s a bibliography!)

Personalisation policy and the principles of developing person-centred care have promised a great deal in terms of increased choice and control for service users, and a change in focus towards greater user participation in services. While putting people at the heart of services is fundamental to a progressive and ethical social care culture, the gap between practice and policy in relation to the personalisation agenda can look like an insurmountable chasm to the practitioner. This is an area where promises have bounded ahead of practice experience.

What is personalisation?

Personalisation is a process which puts people who use services at the heart of decision-making about what is right for them and how their care and support needs will be met. The opaque jargon of social care can be a barrier to communicating key concepts, and defining ‘personalisation’ is crucial as the term is used in different ways and attracts meanings which can depend on the agenda of the speaker. Sometimes personalisation can be used as a synonym for person-centred practice and support. Gardner (2011) explains that ‘personalisation’ incorporates “different strands of ideology, theory, policy and practice”(p2). Not all definitions are inclusive of the groups of people who may lack capacity to make decisions for themselves about their care needs so it is easy to see how the rhetoric can overtake the reality.

The ‘personalisation’ agenda as it has been known is more than moving people to ‘personal budgets’ and the roll out of direct payments as a default mechanism for delivering social care. It is about moving the paradigm of ‘power’ away from the centre and towards the individual. The development of this personalisation agenda took place in the context of a great deal of excitement and promise. In the early stages where the Independent Living Fund (ILF) was created in 1988, allowing for the first time people who used services to directly commission and purchase their own services. This continued through the various configurations of direct payments (initially introduced through the Community Care (Direct Payments) 1996 Act) as they made their way through different user groups and the scope extended, leading to Putting People First (2007) which pushed through the ‘transformation agenda’ in adult social care to move towards personalisation for all.

It is important that we don’t confuse ‘personalisation’ with ‘direct payments’ nor ‘personal budgets’. Different models of providing people with more choice and autonomy over decisions which are made regarding their care can be done in many different ways and in some ways, the handing out of money and telling people to get on with it – with or without the requisite support – is a very narrow attitude to take in terms of allowing choice. Choice has to include a choice in the way that we can choose about what we receive, but there has been a political emphasis on direct payments as the gold standard of choice and that leaves some at a much greater disadvantage than others in terms of having control over their own support packages. The jargon and language attached to the change in adult social care creates a layer of professional knowledge so that in itself, it removes elements of knowledge and control from people who use services.

Gardner (2011) states that “Personalisation reinforces the idea that the individual is best placed to know what they need and how these needs can be best met. It assumes that people can be responsible and make their own decisions but people need information and support to do so” (p34).

Personalisation is about far more than ‘cash in pocket’. The system embraces models for establishing different routes to choose but in practice some of these are scarcely developed. For example, using individual service funds to buy support for older adults and people with mental health needs. This focus on the individual being at the heart of the process of choosing and having more control over the care that they are provided with and establishing a framework for person-centred practice lies at the heart of the ‘personalisation’ agenda. However, the path towards a goal that it is impossible not to support wholeheartedly has become muddied with the realities of spending cuts, local authority processes and challenges which have been continually ignored rather than addressed.

The policy has been driven by the wish to overpromise in terms of extending personal budgets (and hence the ‘personalisation’ agenda) to all within specific time frames where the reality has not been able to keep up. So we have seen the reinterpretation of ‘personalisation’ to represent care and support packages that in reality look no different at all to those which were delivered 5 or 10 years ago but with a different layer of language and bureaucracy layered on top of them. This creates further disillusion within the profession, especially as the social work profession is committed to increasing person-centred practice and empowerment of individuals in the face of the ‘system’ which can sometimes be oppressive and dictatorial.

The implementation challenges for the personalisation agenda have been extensive. While this is to be expected in any process involving widespread changes behind both the philosophy of a system and the systems themselves, the agenda of promoting user involvement, choice and co-production has moved at different rates for different user groups. For example, while the roots of the personalisation agenda lie in the Independent Living Fund and the processes built on driving forward choice and control for adults with physical disabilities and learning disabilities, SCIE report 40 (Newbronner et al , 2011) explains that “There is a risk that people in later life are being squeezed into a ‘one size fits all’ model of personalisation designed with and for younger people with physical and/or learning disabilities”.

Practitioners on the ground who are often the key to success of failure of these policies in practice perceive that there is little interest in addressing their experiences or hearing their feedback.

Why personalisation?

Personalisation is an important policy aim and it is important that it works. The idea of self-directed support (or personalisation) has been a process and direction through which policy has been travelling for decades. It touches on the fundamental aims of what social work is about and how it is used in practice. There have been many changes in the way adult social work has operated since the NHS and Community Care Act (1990) was rolled out and particularly as ‘social work’ developed into ‘care management’ through this period. So why was ‘personalisation’ needed? As local authorities disavowed themselves of delivering services directly, the logical step, as purchasers of services would be to ask people who used those services to have a greater input and role in making decisions about which services were commissioned. That, at the heart of it, is personalisation. One of the main criticisms within the care management model of services and care plans being written by social workers with services being defined by block contracts was that there was that this was very much a ‘one size fits all’ attitude which left people with little choice apart from accepting or declining the services which were on offer (Maclean, 2011).

The policy move to change this and to shift the ‘power’ from the provider to the user has been wholly positive. There is no professional expertise in deciding what meets the needs of individuals that cannot be trumped by the individual deciding for themselves. For this policy to move into practice, there have been accompanying bureaucratic and process-driven changes, such as the introduction of self-assessment processes and attempts at rationalising resources with some transparency (with mixed effects) around the amounts of money spent on care so that people can make their decisions about the services which best suit them. While the direct payment model is the most touted, there are also routes through local authority managed budgets and individual service funds (ISFs) where budgets are shifted to service providers to deliver as required by the service users.

How is personalisation?

The barriers to extending personalisation have been addressed in numerous research literature. There is much evidence which seems to repeat the same conclusions that the progress of different models of delivering care, because ‘personalisation’ is about more than direct payments. This leads to frustration among practitioners that the current barriers are exactly the same barriers which were identified to the same groups of people as those to direct payments five years ago with little progress in some areas.

SCIE carried out research (Newbronner et al , 2011) focusing on people with mental health needs and older people which were the groups of people where the take up of personal budgets has been slower to gain traction. They looked at the different ways that personal budgets were offered: namely those which were directly commissioned and managed by the local authority, third party managed accounts, direct payments or a mixture of these things. They found that there was a risk that inherent processes to assess and allocate resources such as the RAS (resource allocation system) and the assessment process which may be initially a self-assessment or a facilitated process of assessment depending on the local authority and the individuals’ needs, needed to be tailored more finely towards the relevant user group.

“Where a generic system [for RAS] was used it highlighted inequalities for resource allocation between client groups. Older people, especially those with high care needs, appeared to be the most disadvantaged.” (Newbronner et al , 2011) p9

This lack of equitable access through the ‘front-door’ leads to increased disillusionment with a process which is supposedly designed to be enabling and supportive.

Another barrier is that of attitude of social worker and organisation, which is mentioned in an Age UK report “Personalisation in practice” written in 2011.

“There was a concern among support providers and some LA/Trust staff that many PB (personal budget) holders, especially older ones, were being steered away from direct payments and towards managed accounts or services by the LA (local authority” p9.

This indicates that some of the ‘blockage’ on progress and implementation is within the systems which are meant to promote it.

The intransigence of social workers and the lack of desire to embrace new models of service provision which move the locus of ‘control’ away from the professional and towards the person who uses the service has often been argued as a reason for the poor take up of direct payments first ( (Littlechild, 2002) where they say, in relation to direct payments, the forebear of the current personal budgets “it is not disabled people making informed decisions to reject the idea of a direct payments package, but their social workers effectively depriving them of access to direct payments by failing to provide information and support” (p138). This is a harsh judgement to put at the feet of practitioners but it is one that is popular among policy drivers as it is easier to blame the attitudes of practitioners than to evolve methods to promote and simplify the methods of delivery of the personalisation agenda.

Unfortunately the ‘blame’ agenda took hold early in the development of policy making and has led to greater alienation of practitioners who do want to try and make things work. There is a sense of being blamed for not embracing personalisation when the system is flawed, not because they are negative but because the processes are inexorable and have been built to reflect the needs of particular service user groups whose needs, priorities, and abilities are not universal. Effectively, policies are designed to fit some service user groups at the expense of others. Glasby (2012) states “one danger [of the roll out of personalisation] may be that current policy rhetoric is so strong that it is difficult for people with legitimate concerns and questions to raise these in an open and safe environment. Speaking to front line practitioners, some feel as if expressing doubts can be seen as ‘heresy’ and they are reluctant to say what they are thinking. While this may not have been the intention of policy makers, it could be a significant barrier in change if people feel concerned about a policy but don’t feel comfortable exploring this further, and simply disagree in silence.” (p8)

In some of the legitimate concerns, (Newbronner et al , 2011) explains that there is an inherent biases present. Referring to resource allocation schemes (RAS) the study found that “Where a generic system was used it highlighted inequalities in resource allocation between client groups. Older people, especially those with high care needs, appeared to be the most disadvantaged.” (p6)

There are therefore, many legitimate concerns which have been evidenced through research into ways that personal budgets have been used with different user groups has shown. It is vital that the cautions voiced by less enthusiastic practitioners and service users are embraced by those who are guiding policy, rather than being written off as being ‘negative’ without having the chance for their voices to be heard and for lessons to be learnt as a result.

Another challenge that is faced in practice is one of time. Quality support planning needs the investment of time. In the ideal world, presented by those who ‘run with’ the agenda, everyone is able to take an active part in making decisions for themselves and choosing their own care to meet their needs, as defined by themselves. The reality is that some groups have not been able to engage in the process of taking an active role in their own support planning; they are effectively excluded. This may be because they lack the capacity to manage a direct payment or organise a personal budget themselves, or because they lack support systems around them, such as family to help them do this.

SCIE report 40 (Newbronner et al , 2011) emphasises the fact that older people are more likely to need care during a crisis. People undergoing a crisis are likely to be less able, at least initially, to engage in the process of planning and organising their own care. Intermediate care teams typically assess and set up a temporary interim care plan and budget. Support planning then takes place a second time once the person is in a more stable situation and able to take stock. The time taken to set up a more personalised care plan in terms of the administration hoops to jump through are a significant barrier to some people and some ways of providing support.

Where does Personalisation go?

The ideology behind personalisation is sound and needs to be embraced wholeheartedly.

As practitioners we want work to support, involve and include people who use our services. The future must involve a stronger focus on services and delivery of services in conjunction with people who use them, but in order to get there, we need there to be a realistic, no-blame space for discussion between those who make policy and those who implement policy, as well as those who use services who lie at the centre of the social care system. There is still a disparity in terms of those who are best served by current practice. People who have benefited most from personalisation are those with the best advocacy and loudest voices. For the policy to embed itself in practice, it needs to offer the same quality and opportunity for flexibility to all user groups including those who are not able to raise their voices and who don’t have family advocates to speak for them. That’s where the role of the social worker has scope to be established to a much greater extent. As practitioners on the ground they have some of the most acute understanding of the challenges faced by people they work with, particularly people who are not able to best articulate their own concerns. If personalisation is going to work for everyone, we need to hear the voices from practice.

 

Biblography

Age UK. (2011). Personalisation in practice : lessons from experience. London: Age UK.

Netten et al (2012). Personalisation through Individual Budgets : Does it work and for Whom? . British Journal of Social Work , 1556-1573.

Gardner, A. (2011). Personalisation in Social Work . London : Sage.

Glasby, J. (2012). The controversies of choice and control – why some people might be hostile to English Social Care Reforms . British Journal of Social Work 1-15

Littlechild, J. G. (2002). Social Work and Direct Payments. Bristol : Policy Press.

Maclean, S. (2011). Personalisation and Person-Centred Care. London : City and Guilds.

Newbronner et al . (2011). SCIE report 40 : Keeping Personal Budgets personal : learning from the experiences of older people, people with mental health problems and their carers. London: SCIE .

Making Adult Social Care Better 1

I think I’m fairly good at griping and raising ‘problems’. For the next week, I want to try and take a positive approach and look at solutions as well as problems.

A few conversations I’ve had over the past week have focused on what is wrong with adult social work and mental health social work at the moment but more importantly what can be done to make things better.

My frustration is that for all the discussions that take place in the sector, so few seem to focus on those of us who have worked and are working at the so-called ‘front-line’. A home carer knows about the ways that contracts have been managed and awarded at the lowest cost and they will be able to tell you with far more insight than any contracting manager about the effects of 15 minute ‘spot’ visits and the lack of dignity present in the care for older people. They would also be able to give you an amalgam of ideas which branch from consideration, knowledge and experience of a wide range of service users.

Are employed home care workers ever invited to discussion forums and debates about the future of care? No. But you know, maybe the feedback would be the most valuable.

On a more personal level it feels as if the conversations about service design and delivery take place around and above us – with us being the people at the front line of support. Yes, there are discussions  with service users and carers but how much effort is made to seek out opinions that do not fit in the model that the consultants want them to express? How many of the people who attend these meetings, discussions and debates become self-selecting.

If you create a service user group, for example, in a particular borough, it seems to me obvious that you are most likely to engage will be those whose voices are already heard through different means.

I like to set myself up as some kind of advocate in terms of having an understanding of the needs of people who don’t often have their voices heard in these kinds of meetings and debates because the discussions I have are mostly with people who are at their lowest ebbs on the scale of health and need.

For me, it is crucially important that these people are not left behind by commissioners and service design but my experience and understanding of the sector suggests that they are.

I don’t want to keep harking back to the roll out of personal budgets on the back of the model of direct payments but I will. The voices of those without support and without advocates are understandably quieter and the way that the services have been designed focuses quite rightly on choice but what is not present is a way for an equitable service to be delivered to those who aren’t for some reason able to express choice.

So things that can make things better

– Use of advocates in a more formalised manner throughout the system. Volunteer advocates have a role but I see more mileage in professional advocacy with extensive investment in non-directed advocacy as that is potentially where the greatest need lies. If I weren’t so tied to my job in terms of needing a salary to pay the bills, I would, at a flash, try to establish some kind of enterprise to focus specifically on support planning and advocacy for adults with dementias. I hope there is a role for independent social work in this area in the future – in the meantime, if anyone wants to jump on my idea and run with it, I am happily ‘open sourcing’ it.

– involving front line practitioners in conversations, debates and discussions with the local authorities relinquishing some of the reins of power in respect to conversation. Recognise our professional vigour and competence. We see people and have discussions with people that will never attend forums collectively. We can signpost and support commissioners and contracting officers but we are never asked and never given the time to think more creatively outside our little boxes of control. We have ideas and a happier, more connected workforce is an engaged and interested one.

– speak to home care workers too – those with agencies and where in-house services still exist, with them. They will have good ideas about the ways that their services are failing.

– home visits to facilitate discussions – why have all meetings in a central hall when it can be limiting regarding those who have greater physical and mental health needs.

Technology can facilitate greater conversation and communication with two-way flows but face to face discussion is still very important as technology and keyboards can alienate some people – perhaps exactly those people whom it is most important to connect with.

-Practitioners have to be more engaged with developments in the sector and unfortunately I don’t see BASW or the embryonic College of Social Work being particularly engaged with social workers. Why have social workers become so disengaged from professional organisations and unions? Is it to do with a fear of employers? I think some more group action could really build the strength of social work but it is hard to shrug off the feeling that we are a disengaged and disenfranchised profession that like to feel sorry for our collective selves and wallow in our diminished status. I think if we took a stronger political stance and stood up to our employers and their political agendas and displayed more independence of thought, we would be able to demand more respect.

I have decided that while I can moan and groan with the best of ‘em, coming together with ideas for improvement is by far the best way of making our voices heard.

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.

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.

Cuts – a personal tale

A couple of weeks ago, I had one of those deeply depressing moments that will generally punctuate a career in social care.

I had to go and tell a woman, who cares for her mother with enormous patience and dignity, that we could not increase their personal budget although her mother’s care needs had grown.

I suppose I went to my manager in a relaxed almost casual way and explained how the needs of the older woman had changed and to ensure her well-being, she needed additional time.

I was told, with a degree of equal sadness and regret that there would be no increase. If we were to provide what I felt was a necessary increase in care, the time had to be taken from the the hours already allocated.

She did, to her credit, try to have a discussion about this with her own manager but there was no budging on budgets. Despite the change in various situations, there would be no extra money. In fact, she added, the plan really needed to be cut.

It had been my first personal budget implemented. The council, in an attempt to encourage and prod us to implement these personal budgets had promised us and by extension, the service users and carers we work with, that no-one would be disadvantaged by moving to a personal budget so even if the RAS (resource allocation system – the way that figures are attached to needs through the personal budgets  system) did not ‘deliver’ enough money to provide an equivalent package of care that had been delivered under the ‘old’ system – it would not be reduced (and here’s the key) at least, not initially.

Now this particular service user and her daughter had what was a high package of care. It had costed much  more than the ‘RAS’ had spat out.

After making the promises, after the move to personal budgets is no longer an optional roll out of volunteers – the cuts are coming.  There is no longer the carrot to offer of ‘equivalent packages of care’ because we now offer everyone as a matter of course a personal budget and those who were not receiving them are being transferred over to the new system regardless – they don’t have to be self-managed, of course, but they have to exist.

So I visited the family and we looked at ways of shifting around hours.

The hours that were cut were the respite hours.

I suppose it was inevitable.

Family carers are invisible. The work they do is not costed. Of course the daughter was sacrificing her own needs for a few hours respite to her mother’s needs for additional personal care.

This is what the cuts mean to one family.

I had to tell them and negotiate with them about what to cut from their own package of care.

Not the Prime Minister. Not the Millionaires in the cabinet. Not any elected politician or Council Chief Executive. No councillor had to sit in that room with me and look the service user and carer in the face and ask them what they would prefer to give up from their package of care.

I’ve known this family for many years. I have a good understanding what is at stake for them and how much these cuts are hurting. I also know they won’t complain or grumble or shout from the rooftops.

They are not going to be going on any rallies or demonstrations against the cuts – not least because the respite hours have been cut.

We who can, have to demonstrate and shout and scream on their behalf.

And you know, as I know and I say this with a heavy heart – they’ll be much more of this to come.

Respite, Disability and Personal Budgets.

Rivan Vincent has been prominent in the news over the last day or so.  She has a six year old daughter, Celyn, who has quadriplegic cerebral palsy and epilepsy. In the face of additional respite services being denied to her, she expressed her frustration on a Mumsnet forum stating she had asked social services to take her daughter into care because she could not cope anymore.

From this forum post, a campaign was generated which has led to coverage in many national papers.  The Mail, The Guardian, The Telegraph, the Mirror, The Independent,  – they all cover the story.

All, quite rightly broadening the debate to concentrate on the wider issue of access to respite for those who care for people (particularly children) with disabilities has had welcome ‘column space’ in the news agenda.

I really hope that Ms Vincent does receive the additional support she needs and it is possible she will due to the intervention of the Prime Minister in her case.

What I hope, far more, is that the debate is continued and that it is not only Ms Vincent, and not only the carers of children with disabilities that benefit from this flash of publicity.

I am concerned that the government have batted back criticism of their promises to promote respite by claiming that they are pushing extra money into these services.

An extra £800m apparently. Not ring-fenced. Going to local authorities. So in effect, it is money that is going to be swallowed up with other care costs and the government can claim the moral high ground – but pushing an additional £800 million into respite care while taking hundreds of millions of pounds from local authorities in other areas doesn’t really cut mustard, so to speak.

I wonder how long it will take for the government to blame local authorities for not providing care services. Not too long.

The Telegraph leader which urges us not to blame Downing Street for these matters

South Gloucestershire council, not Downing Street, has declined Mrs Vincent’s request. No doubt its social services budget has been cut – but is there no money to be saved elsewhere? The council’s website is heavy with the jargon of environmentalism and diversity. Perhaps its “equalities team” could be slimmed down to free up money for Celyn. And perhaps other local authorities should start dismantling similar initiatives before cutting front-line services and putting the blame on the Government.

So we see the rub. It is the council that is spending things on anything that isn’t ‘front-line’ that is ‘to blame’ for the current situation.

For me, it’s important this opportunity isn’t lost to create more interest and focus on the role that carers play not just carers of children with disabilities but all carers. If the government really wanted to help more broadly, they could look at the insult which is Carers Allowance. That would put more money in the hands of carers.

The problem is that for every Celyn who has public focus, there are hundreds of thousands who don’t have the same media access and spotlight. Saying that it is important that this becomes and remains an issue in the public consciousness.

The fact is, it comes down to money. Better care costs.

It also seems almost woefully ironic that in the face of cuts to Disability Living Allowance and Employment and Support Allowance, the government seems to have found a conscience for disabled children.

Cameron would be as good to remember that children grow up and continue to need support and continue to face higher costs of living than people who do not have disabilities.

There’s an article on the  Guardian’s website from the mother of a disabled child, who writes, in the context of her frustration about the process of assessment by social workers

Instead of strangers with clipboards, the first stage in an assessment could be made by the disabled person themselves. My daughter could have been asked to keep a detailed diary of what she did and what she needed help with. It needn’t be written down; it could be recorded or dictated. This would allow her to paint a rich portrait of her teenage life, which includes going out to see The King’s Speech with friends, as well as someone helping her on and off the toilet.

This baffled me because that is exactly what is and has been happening through the roll out of personal budgets and self-assessment questionnaires. People DO write their own assessments now. They shouldn’t need to be written. They can be recorded, drawn, dictated – that is what we were promised in theory.  This is exactly what the Putting People First agenda should be doing and encouraging – instead of generating a whole new pile of forms.

This week I had to have a couple of support plans for users of  Personal Budgets approved. They were both for older adults with dementia who unfortunately were not able to take as full a role in the decision process as would be ideal due to a lack of understanding, however, I spoke extensively to family members and gained a good feel for the situations at hand and provided advice as to what I felt might be useful.

Family members while involved felt confused by some of the details so I tried to simplify as much as I could.

Infuriated by the paperwork, I pushed my ‘forms’ to one side and wrote out the support plan that we had discussed extensively on just a plain piece of paper. I was frustrated by the level of repetition that was expected of me.

After all, I remember training I had been on about wonderfully creative support plans and all the nodding and smiling about that’s what we should be using. Let’s work in new ways and break out of local authority mentality.

I took my ‘new style’ paperwork which involved just free form writing. No questions answered.  No exposition about what could or could not be done.  My manager thought I was having a joke with her and I responded, no, I hadn’t filled out ‘x’ form or ‘y’ form. This was the support plan that I was presenting.  They nodded and agreed.  Then told me to copy out all the information into one of the local authority forms.

I did because if I hadn’t the services might not have been provided in the same way and to be honest, it didn’t take me too long but it is indicative of the type of way that people have been working for so long.  This happened to me two days ago.

Local authorities have had lots of ring-fenced money to promote the shift to personal budgets. I think some of the focus and project management has been aimed at wasting as much of that money as possible.

We are left with systems that are barely shadows of what they could have been. Sure, they work fantastically for some people but the rest have to pick up the dregs that are left behind.

Hopeful thoughts  for the day.

a) It’s Friday

b) Ms Vincent’s desperation and plight will lead to greater insight and better services for all disabled adults and children and their carers.