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.

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.

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.

Meanwhile in the Office..

Usually when I’ve mentioned workloads here, it’s because they are increasing or we are going through one of the ‘peaks’ in the general ‘peak or trough’ pattern of work balances.

I’m going to do it again because we are definitely in a ‘peak’. The problem is, the peak  has been pretty much ongoing for a few months.

The freeze on recruitment is biting much harder now. I suppose it was sustainable when one person, two people left. When numbers five, six, seven left it became more obviously apparent to everyone left in the office.

Our office has an empty look to it and none of us are ‘smart working’ or ‘working from home’. Sure, we have visits in the community but even at the beginning and end of the day, there is office space in overabundance that makes the thought of hot-desking comical.

So we are each working on more cases and the cases we are working on have more urgency attached to them as the allocation to a care co-ordinator have come later than they might otherwise have come.

Paperwork is being left uncompleted. Oh, you may pat me on the back for prioritising visiting service users and carers at the expense of ‘filling in forms’ but each piece of paperwork I don’t complete in a timely fashion has a consequence for said service user or carer. It might be a delayed processing of an individual budget – it might be the delay to a respite admission or a carers assessment – it might be the delay of attendance at a Continuing Care Panel (lovely 55 page assessment form sitting on my desk that induces nervous twitches). I could bring the form home – but I don’t. At the moment, I honestly think it is the ability to leave things behind at work and walk out at 5pm (as much as is possible) which is preserving my sanity.

It does mean that things aren’t getting done though.

There have been a couple of recent consequences of this – not helped by a rush of Mental Health Act Assessments  and Best Interests Assessments which had very time-specific periods in which to be completed.  For reasons that may be obvious, I have to prioritise Mental Health Act Assessments above everything else when they come in and Best Interests Assessments usually are requested in my experience during the 7 day period that an urgent authorisation is ‘running’ so have to be completed within that seven day period (note – these seven days have no consideration for the distinction between ‘working’ days or not and they include the period that the paperwork needs to flit backwards and forwards between Managing Authority and Supervisory Body so realistically, it means the Best Interest Assessor will have 3/4 days to complete the assessment).

My desk is like the inside of a paper recycling depot with filing done in various piles of paper. One pile is ‘things to be filed’, One is ‘things to do’, One is ‘not sure where to put this piece of paper’. I have overflowed to the empty desk next to me.

Yesterday some things  happened that caused me to reflect on the current work pressures.

Our service manager approached me at roughly 9.01am and asked me for the Self-Assessment Questionnaire for a service user (who has fairly advanced dementia and a distant and uninvolved family and therefore would need substantial assistance in completing it) I had taken on a few weeks ago. I hadn’t done it. She was very pleasant about it when I started listing all the other things that I had been doing. As I am wont to say when asked why I haven’t completed something ‘it isn’t like I’ve been sitting at my desk twiddling my thumbs instead of completing the work’.

The service user involved had a care package that had been set up as an emergency and it was actually working really well but we needed to create an individual budget for her. Ironically, I’ve visited her a few times to monitor the care package and ensure both that she is keeping well and to enable us to build up a relationship so she begins to both recognise and trust me. I didn’t get round to the SAQ as the format of questions was so alien to her. She didn’t want to answer questions about what she could or couldn’t do – indeed, she didn’t accept that she needed any support whatsoever and would say she didn’t understand what these nice ladies coming into her flat were doing (they were preparing meals for her!).  What she wanted was to tell me stories about where she used to work (although they were framed in the present tense) and tell me about her friends (mostly moved away or died) and how they visited her regularly.

I hadn’t completed the SAQ and the Performance Indicator Monsters are chasing me down. But, service user is safe and receiving support.

For me, this makes a mockery of the process of individual budgets. Yes, she could have a wonderfully creative package of care in place. But where is the time to sit down and talk her through each stage when she is (understandably) completely disinterested in process. It can feel almost cruel to labour the point for the sake of the department completing forms and ticking boxes.

How is her service to be ‘personalised’ and where are the champions of personalisation? They are telling us about packages of care where young adults can choose driving lessons to get around.  Where are the champions of the personalisation agenda in helping us with means to engage people who are frightened by the process and overwhelmed by self-assessment questionnaires?

Oh, wait, all the training is about people who take an active interest in being involved in the process of care planning and self-assessment.

I try. Believe me, I try. I have no interest in the process failing. Indeed, I held out a massive hope that personal budgets would serve older adults who lack capacity much better than the direct payments system did. I have been sorely disappointed.

Anyway having explained away my lack of action to the manager, she nodded, expressed sympathy and headed on her path.

Later in the day, I was confronted by an emergency situation. It wasn’t the nature of the emergency that caused me difficulties. I have dealt with many similar types of circumstances through my years of practice but what was different was my reaction.

I spoke to my manager and as we concluded that I needed to make an emergency visit, I asked for a colleague who was ‘on duty’ to accompany me.

The situation perhaps didn’t warrant it and there was an expectation that it was the kind of issue that I should be able to manage with my proverbial eyes closed but internally, I felt some of the panic rising. I suspect that was the combination of stress about workload issues and thinking about my next arranged visit.

My manager agreed for someone to go with me – possibly because I don’t think I have asked of assistance with a visit  for about three years so she might have clocked on that something was up so  we went together.

On arriving, I saw that the situation is one I could easily have managed alone. I felt almost embarrassed that my colleague had come with me but then I thought, I knew I had been right to ask. I can recognise my own reactions and needs better than anyone else.

Situation resolved successfully, I apologised profusely to my colleague for ‘wasting her time’  but she, of course, denied this and said she was happy to help.

The rest of the day, I was analysing why I had asked in the first place. Why did I suddenly feel phased by an issue that I have dealt with successfully many times before? I’m not sure I can answer that but I think I’ll put it down as a positive recognition that sometimes, we just need a little more help in the day to day work and we need to be able to recognise these moments to better serve those who rely on our services.

Even after ten years, I still have ‘wobbles’ of confidence. They happen less now as is to be expected but for a moment, it was as if I had been transported back to my early days in practice when I wondered if I would ever be like my more experienced colleagues and able to manage anything that was at the end of the telephone line.

It reminded me I’m not there yet and perhaps I never will become instinctively complacent about the work.

That’s not a bad thing as long as I’m in a team that is encouraging and supportive.

And I am.

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.

The Financial Management of Personal Budgets

The soon-to-be defunct Audit Commission published ‘The Financial Management of Personal Budgets’ today.  Community Care have a good run down on the basic points but I thought I’d read through it myself, just because I’m actually genuinely interested in the issues.

This report was based on research taken in eight different councils.

[picapp align=”none” wrap=”false” link=”term=money&iid=7236553″ src=”http://view4.picapp.com/pictures.photo/image/7236553/gallery/portrait-mature-woman.jpg?size=500&imageId=7236553″ width=”234″ height=”351″ /]

As the report states in its opening words it is

‘Intended for finance staff and staff in adult social care departments with an interest in personal budgets.. ‘

I have to wonder if that is in order of importance. It probably is as far as the councils are concerned.

I had a brief glance over at the report this morning.

What did I learn?

Well, to be frank – nothing in there surprises me,  but then, I’ve probably got more experience of the working of personal budgets than most people.

As I read through the report, I’m just highlighting a few of the issues that I come across as well as my thoughts and responses.

– People with mental health problems are less likely to have access to personal budgets than other service user groups

The report highlights some of the issues of disentangling health and social care budgets being a particular issue for mental health. I’d add that in the ‘mental health’ sphere you have the people such as those that I work with who have dementia and the roll out of personal budgets for people who lack the capacity to manage them has been woeful because none of the training I have attended, and none of the ‘piloting’ was done with the group of service users who need more assistance to manage budgets due to capacity issues and who might not be able to have the imagined ‘choice’ simply because the choice is being made outside their sphere of control in any case. These people don’t make the ‘perfect case study’ examples that the policy drivers want to promote.

Personal budgets are unlikely to result in significant cost savings for councils.

This is a massive issue. We were always told that theoretically the change should be ‘zero cost’ but the hopeless inadequacy of the resource allocation system (that I have been party to, at any rate) and the growing realisation among service users and professionals that actually care might be being cut ‘stealthily’ or re-classified has made it a less than attractive proposition to push.

In fact, another point that the report makes is that the savings which  might be made by achieving better outcomes for users would actually be made by the NHS rather than the local authority. This highlights the problems with the differentiation between the budgets. Would a local authority pay out when it is saving the NHS money? Hopefully after all,  it it is the right and moral thing to do but with eligibility baselines rising and the government constantly harping on about the ‘protected’ NHS budget, I can see a massive timebomb about to explode in the NHS funding.

‘Method for allocating funding to individuals – the Resource Allocation System (RAS) – needs to be affordable, transparent and equitable for all care groups’.

Well, thanks Audit Commission for making me splutter my tea all over the keyboard as I chortle merrily at the utter dog’s ear that has been made of this process so far

(I know, I wouldn’t be able to do better myself so I shouldn’t criticise quite so heartily but I criticise because I find the system quite oppressive and I hate diluting needs into ‘figures’ it seems to depersonalise the human being behind the assessment and quantify needs but maybe I’m just a bit too fluffy and old-fashioned like that ).

Perhaps it is a reason for the lack of take up in mental health services but the RAS seems to work in a world of its own – based heavily on physical needs.  Note the ‘equitable’ not ‘equal’ or ‘equivalent’.

The report extensively focuses on the RAS systems and some of the inefficiencies that exist in the current formats. There are some examples offered of ways that the systems can be made more transparent and simplified. I hope the team in my borough read the report extensively, is all I’ll say.

Reduction of in-house services/block contracts

One of the things that the report highlights is the way that in-house provided services are increasingly expensive to provide and can’t meet the needs of those who wish to use personal budgets. I refer to my posting about the privatisation and outsourcing of care. Where I work, the in-house care service (which has been dramatically reduced) really is the gold standard of care among a heap of agencies that battle to drive costs down. This is what we are being told to give up for the sake of increasing choice. Quality v choice? It shouldn’t have to be an ‘either/or’.

As for block contracts disappearing? Well, they limited choice in any way – restricting the agencies that could deliver services in particular area – but, the lowered costs without doubt so that may be a further potential strain on the ‘systems’.

Figures

The report states that between 13% and 59% of older adults (34% nationally) have personal budgets – we can see the problem with looking at the average figure here –  whereas, on average 50% of adults with physical disabilities (nationally) have personal budgets and one council is reported to have a 94% take up rate for adults with learning disabilities.

The audit commission is being a bit mealy-mouthed with figures here using three different kinds in the same paragraph to show a point. I wonder what the figures were for adults with physical disabilities in the particular councils where 13% of older adults have personal budgets and we have no idea what the spread of take up is for adults with learning disabilities – just that one council is doing particularly well.

The other interesting figure hiding in the report is that most councils manage the personal budgets for service users but up to 36% and 50% in one council are provided by direct payments. I’d love to know what the breakdown of take up of direct payments is across the different service groups but I think I can guess. Higher with adults with physical disabilities and learning disabilities – low with older adults and mental health.

Auditing, Risk and Choice

The latter part of the report that I’ve been skimming through relates to processes for auditing the use of payments and preventing misuse of funds as well as an explicit statement that choice includes the choice to accept risk to ones self. This has been highlighted as one of the problem professionally with personal budgets getting things off the ground for adults with mental  health needs. I expect that is a bit of a smokescreen put up by people who don’t work in mental health services responding to some risk aversion but it is an attitude which I hope will be challenged.

Conclusion

The headlines highlight the slow progress in personal budgets roll-out in the UK.  I think the news organisations, unsurprisingly, find this the easiest point to pick up but as was stated on Breakfast News this morning, the take up is likely increasingly rapidly on a day by day basis  even since the report was completed but it is important to remember this is a ‘snapshot’ piece of research.

None of the findings are even remotely surprising to me. The more important things to take from this report in my opinion are:-

The massive disparities between the take up in different service user groups

The need for much better working between the NHS and social care to allow for even greater flexibility and to work particularly in mental health to promote a cohesive system of care provision

The risk to good quality in-house services.

The increased pressures on informal carers are criteria rise and the expectations made of informal carers rise. That is, I fear, the main way that costs will be saved.

In my mind, there scope for some really strong research in this area and some new ideas. At the moment, there is a reliance on the model used for direct payments and ILF monies. It is all very well telling people to be more flexible – it works amazingly for those people – but there needs to be more support within the local authorities for staff to better understand the processes and for staff to be more aware of their need to promote advocacy and creativity in care planning.

The desire to push self-directed support is absolutely the right way to be moving. I 100% back up the policy aims but the systems and the will has to be there within the services. The grant money is due to run out in 2011 and there will not be any more money to push this agenda. That’s where I feel the real failing will come. This needs to work for EVERYONE and not just those able to articulate and fight for their own corner.

I know I am a bit like a broken record on this but I won’t stop until I see the point being taken up!