Category Archives: carers
In the bold move towards a transformation in adult social care, it feels from where I sit, that control has completely overtaken any pretence of ‘choice’ in the so-called move towards more idealised ‘person-centred’ care and support planning.
I hope I’ve been clear over the years in which I’ve expressed a remarkably consistent view that I love the idea of people being able to choose the support plan they like from a wide menu of options with ‘professionals’ taking less of a role. I am a massive fan of direct payments. I want people to have more personalised care and more creative care. Desperately. The options just aren’t there yet for people who lack capacity and that is a terrible disservice and inequity that is being served throughout the care system.
Removing care planning from my role doesn’t concern me – unlike those people on the training courses who bang the drums blindly about how wonderful and bright it looks when we allow people to choice whatever they like to put together packages of care, I don’t want ‘retain control’, I truly don’t believe that I, as a professional ‘know better’, but likewise I know that with the user group I work with, it is rare that I can just hand someone a support planning tool and a list of potential providers and tell them to ‘get on with it’.
That is as far from reality now as it was 20 years ago in my work. While I can say that everyone I care co-ordinate who has a ‘package of care’ is now officially on a ‘personal budget’ and some even have direct payments, it hasn’t really increased choice or control for any but a couple of those people.
If anyone for a moment wants to ponder the duplicitious nature of those in policy making ivory towers who dribble down policies which they want to couch in ‘soft’ language so they are difficult to challenge, one only has to read a fantastic piece of research conducted and published on The Small Places site.
It is worth reading through the piece in detail. Lucy, the author, made a number of requests to local authorities to ask about how their Resource Allocation Systems (the link between the ‘assessment’ and the ‘cash’ – basically) was calculated. She seemed to come up against a wall of obfuscation but it’s worth looking at her research in detail.
This reluctance for me, seems to relate to the lack and reduction in spending on care and support – the key ‘missing piece’ as to why a council can ‘reassess’ someone as needing less ‘cash’ than they did last year with a more traditional care package.
My personal experience is that the council I work in (and this is similar to things I’ve heard from people in other councils) probably doesn’t want to share it’s RAS because it’s ashamed of the utter dog’s dinner that it’s made of it. It doesn’t ‘work’. It doesn’t make sense. It is frequently changed. There is more emphasis on physical health needs as opposed to mental health needs and while there can be manual adjustments, some of the figures that are ‘spat out’ just seem nigh on ridiculous (and that works for sometimes calculating care ‘too high’ as much as a figure which is ‘too low’). It comes down to everything needing to be qualified and fitted onto a spreadsheet when actually the needs of two people who might fill out a self-assessment with the same ‘tick boxes’ might have very different needs in reality – no RAS can account for that. One person might under-score because they are embarrassed by the process and don’t want to admit to being incontinent on an initial visit from a social worker because they haven’t been able to tell anyone other than their GP – another person might be anxious and think they can manage less well than they can. Sometimes and this is what local authorities and health services seem to find hard to account for, you just have to treat people and their needs as individuals rather than the subject of outcome measures, tick box performance indicators or resource allocation systems.
Shouldn’t personalisation be about putting the user at the heart of the system? Every user should have a copy of the RAS and how the figure was determined. Which questions are weighted and which aren’t. Without that, there flow of money and the control rests solely with the local authority.
I’m fully against ‘traditional’ care packages. Having someone anonymous and constantly changing pop in for a 30 min welfare check once a day isn’t about improving the quality, control and choice in someone’s life, it’s about a local authority doing the absolute bare minimum that they can get away with to fulfil their statutory duties of care.
The lack of openness about the ways that the RAS shows the true colours of the reasons for these pushes towards the Eden of ‘Personalisation’.
While I have no doubt that for some people, as I keep saying, those with advocates, family or who are able to voice their own needs clearly, have and will continue to benefit enormously from having direct payments – it’s worth remembering that direct payments have been available and accessible for many years now.
Forcing everyone onto personal budgets has only discriminated against those with carers by reducing the amounts of money they are entitled to through the RAS (that’s my own experience of how our local RAS works) and has discriminated against those who lack capacity by promising all sorts of ‘creative’ ways of exploring third party management of support plans but without providing any real ways of accessing it (this is my current bugbear as I have been requesting assistance with this for months for service users I work with but have been told it is not possible for older adults yet as only those with learning disabilities have budgets large enough to make it cost effective – thereby clearing discriminating on the basis of age and type of disability).
I have changed from a fervent advocate of a system which was supposed to be so much better for everyone to a bitter opponent of a system which favours some kinds of disabilities over others, some kinds of service users over others, some kinds of carers (those who are willing to put a lot more time in to manage and support plan where necessary) than others and all to provide fewer services under the guise of choice.
No wonder Burstow is pushing everyone towards direct payments. He is pushing everyone towards a system which masks the way that payments are determined and discriminates openly against people who lack capacity or who have the ‘wrong’ kind of disability or family support.
Now we know that the local authorities can hide the way they make financial calculations, it becomes much more obvious to see behind the facade of the ‘Wonderful Wizard of Oz’ who promotes choice as the final goal to achieve at all costs.
I feel tricked and betrayed by the implementation of the personalisation agenda and the lack of any of the services around it to tackle directly with the problems at it’s heart.
I was deeply disappointed, for example, that the Mental Health Foundation’s ‘research’ and work with people specifically with dementia only focussed on people who either had capacity or had family. Their advice talks lovingly of setting up trust funds, appointing brokers – well, that is a fantasy rather than a reality and exists only on paper as a choice. They merely replicated a lot of work which was done when direct payments were rolled out around lack of take up for people with dementia and they hadn’t said anything new (I happened to write my dissertation about the lack of take up of direct payments for older adults so did actually do literature researches at the time..).
Anyway, I’m getting ahead of myself.
For now, I think it’s important that we who see through the cosy policy makers congratulating about a ‘job well done’ speak up and speak up loudly for those for whom the system is a further barrier for true individualised care because these self-same policy-makers see them as ‘too difficult’.
My title explains that the personalisation dream is dying but it isn’t dead yet. To be brought back to life, all those involved need to embrace the principles of honesty and openness and not blind themselves to their successes if they can’t see the continuing barriers.
I have some across lots of discussions and debates about ways of using social media and new technologies and interactions to ‘help’ social services become more effective. Most of it seems to revolve around building online directories and databases of micro providers and services that are available which build on so-called community capacity to improve the way that personal budgets can or might work.
At the risk of sounding overly cynical there is nothing ‘innovative’ in my mind about building a directory of services. To me, this is not a particularly innovative way to use ‘technology’ in social services. It taking a very obvious and well-trodden route to using new technologies. Providing directories while being useful to a certain group of people again exacerbates the isolation of those who are not party to or able to use them. Being innovative isn’t always necessary to be helpful but it is very important that new ideas are focussed so we don’t just end up with increasingly specialised, localised directories that might have more ‘interactive’ features and feedback, look more ‘user led’ and compatible with the buzz words of social media but in the end they are brushing the surface of possibilities.
It feels more and more as if that there is a growing division between the ‘haves’ and ‘have nots’ as far as personal budgets have been extended and does absolutely nothing to address or use technologies to address those who reside continually in the ‘have not’ section.
While at work, we labour with database systems that have clearly been developed through conversations between commissioners and software companies without any recourse to frontline practitioners, nice new provider directories are being tinkered around with while the fundamental foundations of the systems we work with remain resolutely inaccessible.
I’ve had a few ideas myself and whilst I lack the technological expertise to see any of these ideas to fruition, this is a kind of ‘wish list’ of the sorts of things I’d like to see. I’m under no illusion that these are ‘new’ ideas. I am sure similar things already exist in some form but they are things I’d like to see pan out in the longer run. Things I’d like to use at work.
I’d like to see more creativity in the use of technologies to assist with decision making for adults who have some kind of cognitive deficit. I’m a great fan of the ‘tablet’ and ‘touch screen’ model as I think it is intuitively an easier interface to understand. When I see people instinctively reach out to touch the screen of my Kindle (which isn’t touchscreen!) I realise that we are becoming conditioned to seek the easiest input methods which are about touching a screen and speaking into a microphone and perhaps writing on a tablet. Now, voice recognition has improved, I’m yet to come across very successful handwriting recognition (possibly because I have scrawly almost illegible handwriting) but there is potential there. In the meantime, pictures and touchscreens seem like a good way to go.
Using pictures/sounds/music it can draw on multi-media ‘shows’ and explanations of different options – moving beyond the ‘written word’. Providing documentation in aural form or in pictorial/moving form rather than reams of leaflets. Having recordings of familiar voices or pictures of familiar faces might help to reassure. I’m a great fan of telecare in general with the proviso of always being mindful that the human contact is not replaced but in days where human contact is sparsely provisioned anyway, it may be something that can be experimented with.
Why not a YouTube type video to explain how services can be chosen instead of reams of ‘easy read’ leaflets which really aren’t remotely ‘easy read’. Instead of flooding people with lists of providers (which, while good for some ignores those who are restricted in terms of capacity and carers to choose ‘freely’ the types of services they garner) why not explain and expound in different ways the ways that services can work?
Why not explain providers in terms of what they can actually provide and what purpose they serve rather than creating directories that are meant for people with a good understanding of what they want and need?
I was in a day centre last week and there was a seemingly unused Wii. I wonder if he Kinect might be a better project to develop some type of interactive play, exercise and work as it doesn’t need a controller at all and uses the more innovative way of body movement. Using participatory games with larger screens in company can provide different stimuli. I know why games developers haven’t tackled directly the ‘older’ market with games that might otherwise reside in memories but why not repackage old school yard games and board games with Kinects and iPads? It may be a good way to introduce the use of these new technologies in a ‘friendly’ manner which may then see them used in other wider ways – such as directories or personalised information sources. Using YouTube video channels for personally designed ‘reminiscence’ therapies could personalise the delivery of memories and digitise memory boxes where items are not there to build up the frames of someone’s life and people aren’t there to fill in the gaps.
There are many ‘dating site’ type services that match people and organisations. Volunteers to voluntary groups etc. How about a type of match between schools and residential homes? I know it’s something that’s sometimes done locally where I work and having spoken to both providers and some of the kids who go in, they seem to enjoy it and it can change and break expectations – each of the other. I
We talk of social media a lot and often it is used to provide ‘recommendations’ to particular services through these databases. Perhaps more user and carer led general recommendations can be collated. Crowd source an ‘introduction’ to social services provisions by those currently using the service.
Ask ‘what do you wish you’d known?’ ‘what do you wish someone had told you?’ and while taking out all the obviously libellous stuff, a local authority must be brave enough to leave in the criticisms. We learn through complains and criticisms and it can take a lot of guts (or anger) to make a complaint or to criticism and that MUST be respected by the service and the individuals at fault and used as a means of improvement.
I don’t want to see local authorities ‘whitewash’ problems in order to gain sparkling OFSTED or CQC inspections. It sullies the whole process and makes the inspections worthless. Regulation should be less authoritarian and more about actually making improvements and making things better for the end user – not about allowing local authorities to produce the ‘right’ results while poor practice is brushed away from the sight of the inspectors.
But back to my point about using social media to crowdsource – it is important that social media ALONE is not used as an ‘answer’. Crowd sourcing must be honest but it must also be broader than putting out an ‘internet consultation’ and having a Twitter account or blog. There must be pounding of the streets too to engage those who are not able to use digital means to put their points across. There should be knocking at doors and face to face discussions – not leaflets, not inaccessible (for some) groups.
Talking about crowdsourcing though, there’s a much better and perhaps more obvious way it can be used and certainly isn’t being used at the moment and that’s to engage other social workers and professionals into putting together more information and useful methods of practice for ourselves. Sure, it needs time but we remain reliant on organisations to provide ‘guidance’ such as SCIE (who do provide fantastic resources) and BASW and the College of Social Work but why none of these organisations who purport to exist to help social work and social care practice actually engage more directly and use social media and open access blogs/discussion groups/forums/micro blogging etc to engage with currently practicing social workers is completely beyond me.
I’ve become very interested in open access education and resources and feel there is great scope for professional engagement and information to build its own resources and information together with users and carers, together with other professionals but there has to be a push for social workers to see the benefit of sharing and finding appropriate ways to share the information that we learn every day.
I have other ideas which will come in different posts but I’d be interested in hearing other peoples’ ideas for uses of ‘technology’ in the very broadest sense and how they can develop to help the broadest range of people we see in social services – particularly those who are less able to look information up in various fancy online directories.
Scheduling and exhaustion meant I didn’t have time to look at the Dilnot proposals in detail yesterday so this morning I have fired up my browser and am going to make a few initial comments on the baseline main recommendations and hopefully over the next few days can look at some of the details.
The Dilnot Report on Funding of Care and Support runs at 82 pages. It attempts to forge a solution for the currently antiquated and inequitable system of care funding that is currently in place. Much talk has been made of the current threshold of £23,250 of assets, at which people currently become responsible for paying for their own care services but little made of the current discounting of homes in certain circumstances and the ability to raise a charge on a property to postpone payment of costs for care services. Nevertheless, this threshold was deemed as being too low. People who own houses like to keep houses for children. People don’t like those who ‘haven’t worked as hard’ or ‘saved as much’ getting something for free.
The system is broken though, don’t get me wrong, I just think the focus of the discussion has been too much around middle class fears of actually paying for something they believe should be free. Now, I’ve got that off my chest, back to the report.
The main recommendations are
- to cap lifetime costs of care between £25,000 and £100,000 – with a suggested threshold (which is used throughout the report for ease) of £35,000
- means-tested assistance will be extended to those who have between £23,250 and £100,000 of assets.
- Those who ‘enter adulthood’ with support needs will not be means-tested and care will be provided free.
-Universal disability benefits will continue but may be some differences in names regarding Attendance Allowance. (erm.. DLA?).
- There will be a cap on so-called ‘hotel costs’ in residential care between £7,000-£10,000
-There should be a national, portable eligibility framework which is more transparent.
- A government awareness campaign about planning ahead and preparing for potential age-related disabilities. And their costs.
- There should be a new information and advice strategy to help people through the confusing forest of knowledge.
- Better carers support and information.
- More health and social care integration
Of course, these recommendation run alongside the Law Commission’s report for changes in adult social care law. Together they could create a much better and clearer system than we currently have.
The ‘lifetime cap’ allows for insurance policies to be generated and probably very profitable ones too for the insurance companies. Most people do not need high level social care provision but the fear generated by the media is enough to drive right minded people into the arms (those who can afford it and who have substantial assets) into the arms of the insurance companies. I’m not sure how comfortable I am with the lifetime cap on care costs. It means the more wealth someone has, the more they are protected. I understand the logic behind it in that noone chooses ill-health and disability but the more than government spends on those who do have substantial assets, the less there is for those who cannot afford it and the higher the criteria to access support rises.
I just have a few queries which may be answered in the details. If Mrs Smith has a house worth £300,000 and she lives alone with no other substantial assets – say, for example, she has savings of £10,000 – is her house sold to release the asset worth up to the cap of £35,000 – assuming she doesn’t have an insurance policy? If she chooses to live in a care home which is private, but then the money runs out, will the local authority still move her? Will she ‘top up’ the local authority fees, paying above the ‘cap’ to do so? What is she lacks capacity and has no family? I suspect all these answers are in the report but they will be questions I will be looking for. The system of deferred payment is mentioned and I’ll hunt around for clarification.
The cap though, seems to be there to protect middle class votes.
I do, however wholly support the increase in the level of means-testing. I think it is entirely right to continue to means test up to £100,000 and I’d even go further than that. I don’t have a problem with mixed funding, I am just not entirely comfortable with the capping.
Again, the clarity of the coverage of those who ‘enter adulthood’ with care needs is entirely right. There is a necessary distinction between working age adults with care needs and older adults with care needs but quite rightly it is wrong to have a distinction fixed at a specific age. Indeed, Dilnot proposes that those who develop long term care needs before the age of 40 should continue to have a zero cap and costs should be met fully by the state. Above the age of 40 there will be some kind of tapering of the cap up to retirement age where the full proposed £35,000 cap would be reached.
Regarding the accessibility of universal disability benefits, Dilnot clarifies that he does not propose any reform that would lead to anyone losing their disability benefits and that attendance allowance will continue. I do wonder though how this ties in with the government plans to remove 20% of DLA claimants.
There are some recommendations though to change Attendance Allowance (AA). Firstly to change the name to something more understandable and an appreciation that many who are eligible for it do not claim it. That absolutely reflects my experience. People who reach the cap when the government takes over payment will not continue to receive Attendance Allowance (or whatever it will be called) because the government is fully paying for their care needs – which makes sense to me. The Personal Expenses Allowance (PEA) is proposed to continue – this is the payment that is made to people whose costs are met by the government in residential care and is currently about £23 pw – there is a suggestion that it should increase but not a recommendation.
The cap on hotel costs is excellent news in my view because I saw this as a potential ‘get out’ clause for residential homes. I do want to know how some of the private homes will adapt to these new systems though and what the cap will mean for overall quality of care provision.
The idea of clearer, portable assessments is a good one and long overdue. Eligibility criteria interpretation can differ wildly and there needs to be more transparency. The minimum threshold would be applied at the ‘substantial’ level of care so I wonder how this portability will work for those who live in areas that meet lower levels at present. It seems that there is some kind of recommendation to do away with FACS over the longer term.
Can’t be soon enough – a new assessment framework will be developed ‘with experts’. Please please please can front-line practitioners be involved in these developments – not just people who professionally develop policies and have never needed to use assessments in their lives. This is why we end up with unusable systems. There is also a way of building self-assessments into these new models. That’s the idea anyway.
The last recommendations about building awareness and improving quality of information seem to be sound all round. Nothing to argue about there.
I am interested in the recommendations as they relate to carers. As far as I am concerned, I want more than just an assessment for carers, I want the provision of more services. Supporting carers very well both financially and with practical and flexible support is probably the one aspect which can potentially save the government more money in the longer term than anything else – but more than that, it is an issue of ethics and morality. I know that doesn’t often come into government services but it’s something I feel very strongly about.
I also recommend Arbitrary Constant for links and discussion about Dilnot.
Tags: Andrew Dilnot, british politics, care and funding, dillnot report, dilnot report, dilnot report on funding of care and support, dilnott report, Funding, funding of care, health, local authority, long-term care, Means test, nursing home, old age, social care, social work
Yesterday Think Local Act Personal (TLAP) published the results of a National Personal Budget Survey.
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
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.
- Personal view of personal budgets (fightingmonsters.wordpress.com)
- Should private companies be looking after the elderly? (telegraph.co.uk)
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.
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.
- Should private companies be looking after the elderly? (telegraph.co.uk)
Posted in carer, carers, dementia, direct payments, Disability, discrimination, elderly, health, local authority, mental health, old age, older people, personal, personal budget, social care, social work, work
Tags: direct payments, ehrc, elderly home care, equality and human rights commission, government, Home Care, home care and human rights, Human Right, Human Rights and Liberties, human rights of older adults, individual budgets, local government, old age, personal budgets, personalisation, report into home care, social work
To continue my theme (at least initially) for carers’ week, I wondered a while on the purpose of these weeks and days and months we have devoted to various issues. They are about celebration, gratitude and recognition for the most part. Celebrating Mothers Day, for example, doesn’t make us less grateful or thankful for our respective mothers on the other 364 days of the year so what is it about having a special day or week that is necessary.
I’m not a cynic. It is a good focus for events and allows particular issues that can be forgotten to be drawn out into the news agenda for a discreet period of time (a week is good – it can focus the attention). Campaigns can be built around days or weeks or months and themes can be wound up in the consciousness of the ethereal ‘general public’ whose attention can be fickle and fast-moving.
So it is that Carers Week is upon us but for it to be truly meaningful over the longer term there has to be a more systemic change in the process of social care and the way it is done in this country.
I engaged in a very brief ‘Twitter chat’ yesterday with a carer, Casdok, who writes a blog here. She mentioned that since her child had moved from childrens’ services to adult services she had noticed that she was listened to less and (I’m extrapolating a little here because it was in very short messages!) the service received was less good.
A brief exchange mentioned the loss of the relationships with particular social workers – you know, when the social worker used to pop round for a cup of tea – made me wonder what we have lost in the rush towards ‘care management’ which was to be the way that adult social care was organised after the NHS and Community Care Act.
I worked in an adult social care team before I moved into Mental Health services. The office had something of a ‘production line’ feel to it. Assess, review, close. Assess, review, close. Sometimes you would linger if there were direct payments involved but that would mostly be about referring to a different agency or part of the council to set up the payments and advise about employment regulations and advertising for assistance.
The relationship was and is lost. Is this what we study for? To assess, review and close with some safeguarding thrown in with increasing regularity. The processes have been streamlined almost to the point of any independent thought and true ‘assessment’ in the sense of being able to give professional judgements being rattled out of the processes to simplify. This process has streamlined the heart out of social work for adults.
Critical analysis and reflection, yes, there is an option but it has to be in your own time and at your own rate. When we lose the critical analysis and reflection in our work though, we cease, to all intents and purposes being social workers and become care managers.
And where is the relationship-building? The listening. The advocacy. It has been costed out of the equation. It cannot be reduced to a performance indicator and therefore it has no value.
The issue is that it does have a value. It has a value to carers and to service users but often that value is unquantifiable and in a world of measurements and costs, unquantifiable is not where you want a value to lie. Because it is discarded.
The reason I moved from adult social care into mental health social work was because I felt my brain was stagnating to a point. Of course, things may have changed with self-directed support being more available now but I hope I always assessed in a person-centred and creative way. I certainly set up a lot of direct payments packages.
For the moment, in the mental health teams we do have a little more time to spend building therapeutic relationships. We have more time to listen. It is all measured, of course, against outcomes because we have to be able to justify every minute we spend on paid time but the ability to build relationships and to listen are, at least, embedded more strongly in the role.
I can’t see us ever going back to the days of being able to pop in for cups of tea. And we have lost much much more than a piece of cake along the way. We have lost the soul of the profession at the sniping jaws of employers who want to distil creativity out of the job because we need to meet specified targets in specified times. Everything is quantified.
Sometimes though, we need to be less complacent as employees. There are jobs going. There are changes coming in our services. Last years cuts are only the very start. They will come more quickly. Social Work is changing. It will move out of local authorities and I don’t think that will necessarily be a bad thing. It may be the best thing for the profession as a whole, in fact, if not for individual employees who won’t necessarily have the rock solid pensions and the now laughable idea of job security.
Perhaps we need to take more responsibility for our own work and our own profession in order to retain the values that remain at its heart and move into community work and macro-social work.
I occasionally get glimmers of real hope and drive for the future and the ways in which this profession can change and be changed and then, I look at the people at the top and wonder if there is any desire for truly structural changes in the way that social care and social work is delivered. Yes, I want personalisation to work, I really do but I want the value of good (and I really mean good) quality social work to be recognised in the process.
Yes, there are coercive elements to our role. I know that only too well as an Approved Mental Health Practitioner. I didn’t go into this job to be loved and as for respect, for the most part, I can take it or leave it – except for self-respect. I have to be able to feel I am giving the best every day I am at work and that regardless of some of the more coercive elements of my work, I am able to work according to my moral and ethical compass.
Sometimes I worry that has been lost but perhaps among the structural changes that are going on around us in social care, some true change can be affected.
I hope so.
- Looking in the mirror: professional virtual boundaries & social media (jaerankim.wordpress.com)
Carer. Caregiver. Sometimes terminology overcomplicates. What is a carer? A husband or a wife. A partner. A parent or a child. A neighbour. A friend. A niece or nephew. A brother or sister – by blood, or in spirit. A daughter or son-in-law. Sometimes it is the family ties that bind. Sometimes it a a friendship. Sometimes it is location or trust. Sometimes there is no rhyme or reason why one person ends up as ‘carer’ to another and sometimes it is fated or meant to be.
We, in these positions we hold, have this term we use ‘carer’. It means so many different things to different people though. When does a parent become a carer? Or rather, when does a parent stop being a carer? Is there a ‘cut off’? When does a partner become a carer? Do they stop being a spouse to take on this new ‘role’ at any point? I don’t think so. There is no definition that seems to fit the word adequately so we shuffle around the corners of self-definition and sometimes demand it.
We need carer’s assessments for our performance indicators. You live with your mother and help her so you ARE a carer by our definition. Have an assessment. You say you are a wife and not a carer? Well, that doesn’t fit into our carefully determined figures. You ARE a carer by our definition. Have an assessment.
There seems to be a measure of convenience in the figures measured possibly with the best of intentions over this intensely personal and human relationship whereby one person may depend for care in an unpaid capacity (although there are blurs around the issue of payments and I’m oversimplifying) on another.
So this week is carer’s week in the UK. It is a time to focus on Carer’s – recognised and unrecognised – ‘defined’ and ‘non-defined’.
It is an area that interests me inherently. If we don’t care for carers we fail as a society. And in general, in my experience, we don’t.
There is the issue of money. It shouldn’t come first but in a capitalist society where worth seems to be determined on a basis of cash worth, we pay a Carers Allowance of £55.55 per week.
There are certain conditions attached to that sum which are worth sharing for those unaware of the parsimony 0f the state.
You may be able to get Carer’s Allowance if you:
- are aged 16 or over
- spend at least 35 hours a week caring for a person
They should be getting one of the following benefits:
- Attendance Allowance
- Disability Living Allowance (at the middle or highest rate for personal care)
- Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit
- Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension
You can’t get Carer’s Allowance if:
- you’re in full-time education with 21 hours or more a week of supervised study – or doing a course described as full-time by the college or establishment providing it
- you earn more than £100 a week after certain deductions (like Income Tax) have been made
35 hours a week as a minimum. £55.55 per week.
So there are a whole lot of people that Carer’s Allowance will not touch. Let’s think about THAT when the government narrative moves around ‘Benefit Cheats and Scroungers’. Let’s not forget that the government are wanting to reduce DLA claimants by 20% so for the meagre amount that it is, that will affect the right of Carers to claim the pittance that they do.
Many whom we, as state employees may define as ‘carer’s’ don’t define themselves as carer’s. That’s one ‘problem’. The other is that the process of providing services for carer’s while better than it was, could still go a long way.
The argument is that we (the State) cannot pay everyone who would otherwise ‘care’ informally. We can’t recompense parents who are looking after their children or children who are looking after their parents because that monetises ‘normal’ family relationships.
But the issue is that some people need more help than others. Some situations are very far from ‘normal’. More than 35 hours a week care. That’s the equivalent of a full time job.
I don’t want to think about putting the caring role in terms of cash saved to the coffers of the local authorities and National Health Service because I think it’s not necessarily a ‘fair’ swap but we have to accept that as a society, we can provide a decent income and support for those who are providing a service for those who are ‘cared for’.
See, how easily I move into the self-same dichotomy I’m uncomfortable with. Creating ‘Carers’ and ‘Cared For’ as separate compartments is a part of the difficulty of definitions. It is the giver and the receiver and often in the context of family and friends those two ‘pots’ are not mutually exclusive.
But back to Carers Week regardless of definitions and the pots that we fit people into.
Recognition is important.
Carer’s Assessments that actually led to increased support and services rather than just a tick box on the ‘targets met’ column are important.
Allowing for self-definitions of carer’s and not making assumptions of ‘what is best’ is important.
Listening to carer’s through the assessment and care management process is important.
Respecting carer’s as advocates and experts is important and providing a decent quality of live through the provision of monetary support is important.
Being able to ditch assumptions and listen is important however people define their roles.
This week, Community Care are compiling a ‘Carers Wall’ with ideas of small things that make a difference to carers that we work with. That we are.
I am sure I’ll come back to this theme during the week as it is one that is close to my heart and one that is all the more important to shout about in times when cuts are looming.
I haven’t been able to shake off the Panorama programme about the abusive care environment at Winterbourne View. We spent quite a lot of time talking about it at work yesterday as well, at meetings and in the office.
It has pushed my mind back to the time, before I qualified when I worked for about 7 years (5 years full time and 2 years part time while I was studying) as a care/support worker before I qualified as a social worker.
I was fortunate to work in well run small group homes for adults with learning disabilities and had generally very good managers who encouraged person centred planning and the environment would not have tolerated any kind of mistreatment of the residents whom we were charged to look after.
It made me think about the qualities that would make a good care worker. I’m not saying I was particularly fantastic at my job. I enjoyed it and I enjoyed the interactions with the residents – but not being abusive doesn’t make you necessarily ‘good’ at your job.
The most important thing, I think, is not dependent on personal qualities so much as the ethos and environment that you work in. A team of colleagues who show respect to the residents in their own home and who are respected by their managers and each other will not tolerate one ‘rogue’ care worker stepping over the line.
In an environment like the one portrayed at Winterbourne View, there was no regulation or censure by other staff members or managers. The staff who were abusive were openly abusive and so there was a culture that had permeated the home of mistreatment and abuse. I do wonder how much the culture has been instilled in an organisation by management – not that that excuses any individuals from the personal responsibility they hold – but cultures and systems sometimes allow abuse to be perpetuated in an almost ‘Lord of the Flies’ type way when the management take their collective eyes of the ball. It is for that reason that the management of Castlebeck have to take responsibility.
There is also the issue of training of course, but the deeply developed culture of an organisation is more than a matter of training. It helps, don’t get me wrong. Everyone should know the basics and more about an ethos and environment and what best practice demands but training costs and if you are paying staff a minimum wage without allowing them to develop professionally, you won’t have the same levels of satisfaction and retention. Retention is very important in social care settings. I was lucky to have worked in the same two homes for those 7 years. I built up relationships such that I still pop in for ‘parties’ when I get my invites to the annual ‘anniversary’ celebrations (the anniversary of the home opening!).
So taking the environmental and structural issues into account, a good care worker needs patience. This is not necessarily inherent as a quality and I believe it can be learnt. I believe that self-awareness helps as well. Patience was not high on the lists of qualities displayed in Panorama but you need to be able to show judgement and sensitivity in knowing when to talk and when to walk.
Empathy is vital. Being able to see the people you work with and think about how they feel – about how their families feels and most importantly, treating everyone as you or (insert close family member whether child or parent) to be treated. That’s a very simple catch-all and it is hard to teach to someone but it’s a very basic precept. When you see someone with a disability or someone who is particularly old or young as a ‘victim’ or an ‘other’ type of person, it almost gives you free rein to treat them differently. That is a dangerous position to be in.
An understanding of the power dynamics is also vital. Some people seek out vulnerable people to work with in order to feel more powerful. Power silences people and it instils fear. It is important that the peer group are able to identify this and scotch this. This happens across the social work and social care sector. It will never disappear but having an awareness of it can help.
I often tell families of people who are going to look at residential homes to ask the staff about retention levels in the home – how long have they been there? Are they happy? (they may lie, of course!), how many permanent staff and how many agency staff there are? Try and talk to staff who are carers and not managers.
There is no doubt that there is a lack of societal respect and appreciation for support workers and care workers in general. We allow our most vulnerable to be cared for by those who receive minimum wages and have poor working conditions. That won’t change overnight but going back to the CQC and inspection regimes in general, it would be useful to have a deeper understanding of organisational cultures so they can be monitored but perhaps that is too big a job to undertake.
As for me, the years I spent carrying out hands-on care in a residential setting have been crucial to my development as a social worker. In some ways, that’s why I think it’s sad that some of the social care experience needed to go into social work has been reduced as I know I wouldn’t have as much to draw on when I go to review residential homes had I not had that experience.
Sometimes I miss the care work. It was an honour and privilege to have such an important and significant daily role in the lives of others and in some ways, I was working in a much more person-centred way back then than I am now, through the reams of (virtual) paperwork.
- Panorama care home investigation prompts government inspections (guardian.co.uk)
- Hospital ‘abuse’ prompts review (independent.co.uk)
- Four arrested after ‘Panorama’ abuse investigation (independent.co.uk)
Tags: Abuse, Care Quality Commission, care work, care worker, cqc, institutional abuse, management in residential care, panorama, paul burstow, residential care, social work, support worker, winterbourne view
I was sent information by a PR company about a book – Keeping Mum.
I don’t usually respond to requests for information and advertising (and to be clear, this isn’t advertising as I haven’t been paid!) but I thought it might be a book that could be potentially interesting to people who might come across the site. I haven’t actually read the book yet and nor did I request a review copy – simply because I know I have such a backlog of books and lack of time at the moment but the information from the press release is as follows
“When Marianne Talbot’s mum was diagnosed with Alzheimer’s disease, Marianne found it impossible to put her mum into a care home. Instead Marianne cared for her mum in her own home for five years, whilst chronicling her experiences in a blog for three of those years.
The blog has now been published into a book called ‘Keeping Mum’. Heartwarmingly funny, frank and at times emotionally tearing, this book is a record of what it is like to care for a beloved parent whose mind is fragmenting. It is written for anyone, anywhere, who has anything to do with dementia or with caring.
The book also includes some great tips on daily living, managing others’ finances and the social care system. For more info please visit: http://www.keepingmum.org.uk/”
It has received excellent reviews on Amazon and I’m hoping that I will be able to find time to read it and review it properly but in the meantime, it seems to be worth checking out.
The Guardian has an article which highlights some of the main points but to sum up, Fiona and her daughter, Francecca, who was 18 but had severe learning disabilities were being abused and targeted in their local community. In 2007, Fiona killed herself and Francecca and this was seen as a response to the desperate situation that she found herself in with her family being constantly targeted and bullied in her local community. Fiona contacted the police on multiple occasions between 2004-2007 regarding anti-social behaviour and reading the report, it seems to show that as well as her and her daughter being targeted, her son was also subject to relentless abuse and bullying by an ‘identified group of youths’.
Reading through the report it is possible to note the range of persistent targeting, not just of the Pilkingtons, it seems, but of others in the local area by the same ‘identified group of youths’ and the scope of the report from the IPCC was to determine why no substantial action was taken to protect and support the Pilkingtons.
In some of the background information in the report, the situation is described as being one where Fiona lived with her son and her daughter – as well as a daughter who had profound learning disabilities, her son (who is not named) had special educational needs. Fiona’s mother had moved into the home to help her out and it is reported that Francecca was also known to social services and was allocated within a ‘transitions’ team as she moved from children’s services to adults services.
It is noted that Fiona was finding it increasingly difficult to manage Francecca’s behaviours as well as being targeted by the ‘identified group of youths’. These were the key issues that drove her to the murder/suicide.
Reading through the details of each complaint made is a lesson in the lives some people have to live when they are targeted like this in the local community. Fiona’s son seems to have been suffering particularly from relentless abuse and physical assaults and bullying at home and at school. Francecca is called names and obscene gestures are made towards her. There are frequent references to stones being thrown at the house and windows broken.
The report contains extracts from letters that Fiona wrote to her MP and to the Leicestershire Constabulary. She wrote
„she (Francecca) does sign language at her school … so the yobs stick their fingers up at her‟.
„I cannot give my children the freedom of going up the street to the shops as I cannot be sure they‟ll be safe. I do my shopping at the weekend so I don‟t have to use the streets available shops when children are at home after school, during holidays‟.
One of the policemen responded in the inquiry that
he was never aware of the stress or anxiety the issues Fiona Pilkington raised in her letter were causing her. He says whenever he did see her he never got the impression she was a manic depressive, she was always bubbly and chatty and always had a little giggle and none of her behaviour rang any alarm bells with him. PC „A‟ said he got the impression Fiona Pilkington was quite feisty and if there were people outside, she wouldn’t have had a problem opening the doors and telling them to “do one”.
No action was taken when the incidents continued
One incident which did warrant a harassment order occurred when Fiona’s son (who is referred to as being 13 in 2004) was pushed into a shed at knifepoint and was locked in for a ‘few hours’. She also states that her son had been (at this point) bullied at school for 8 years and mentions that the school were taking no action.
The report highlights that the pattern of abuse had built up significantly by this point and enough for the police to have established a pattern. The report goes on to detail every incident and response taken and how it could have taken place in a different way. It’s a long report.
What seems to be clear is that this anti-social behaviour in every sense of the word and that lack of protection or response towards the Pilkington’s has been seen to be inadequate.
I have been involved in a few different cases over the years where harassment and targeting have been problems in communities – although never at the level which is described in this report.
It happens. It does tend to happen more in areas where there is poverty and high unemployment. It happens when people do not perceive others as ‘the same’ or they see ‘easy targets’. Yes, educational programmes can take place which can help us all to learn about non-discrimination but I’m sure the people who are most option to the softer approaches would be those less likely to discriminate in the first place.
One of the points that the report makes is that the linking of this consistent abuse was not classified as a ‘hate crime’ and the police have specific procedures when dealing with ‘hate crime’ including a referral to a specific department/officer who would have been able to assist in coordination of an approach. Disability discrimination may well be forgotten as the perceptions of ‘benefit scroungers’ spreads through the media and government press releases.
A couple of other points I picked up on, apart from the procedural errors in the way the police dealt with the series of complaints. I do wonder where social services fit into this. Not that they would be held responsible but in terms of providing support to Fiona as a carer and in providing some kind of network or advocacy in dealing with the police or pushing the police towards action. I don’t know the set up but I know I have chased (not literally!) up reports about anti-social behaviour when they have been discussed with me both with the local community police officers and the local housing office.
The local housing office, that’s the other agency that seems to be absent although the bounds of this report are limited and they may very well have been working hard behind the scenes but all the ‘identified group of youths’ were tenants of social housing. Pilkington was an owner occupier. I know that anti-social behaviour can potentially put a tenancy at risk and you might think in the list that is compiled this could have been considered. Maybe it was and we don’t know about it – to be fair.
While the ‘No Secrets’ guidance is referenced in the report, it is discounted from being the appropriate procedure to take as Francecca would have only turned 18 in 2006 and the scope of the guidance ‘would not have been relevant’.
I am curious about this – the age, of course, is a relevant issue but it seems to fall within the bounds of things that I would have considered as Safeguarding in the past – and currently.
There does seem to need to be firstly a shoring up of multi-agency working.
These incidents were not recognised as a ‘hate crime’ which they should have been as a main reason for the initial targeting was disability-related.
I worry about a lot of things when I read this report though. I worry about the limits that we are bound to regarding what support we sometimes can and can’t provide. Fiona tried to be a strong advocate for her children and her voice was increasingly taken from her when she was not provided with the assistance and support she should have received from statutory agencies. I worry about the amount of support (or rather the lack of it) that is offered to carers who can come under increasing stress and I don’t see this getting any better in the ‘new world’ as local authorities increasingly take an even more ‘hands off’ approach to provision of care.
I hope the police will be able to implement stronger responses to hate crimes in all senses but particularly pick up on disability related hate crime as a separate and specific offence but also, I hope that those in the government and who rumble on about ‘big society’ and ‘importance of community’ learn to understand that not all communities are as supportive and helpful as they might be in Cameron’s dreams.
Volunteering one day a year might ease the conscience of Cabinet members and make them feel good about themselves but walking a day or two in the lives of people like Fiona Pilkington and reading through the IPPC report might teach them a lot more about what needs to be done to create a better and more cohesive society. It isn’t just about volunteering. It’s about creating hope, work and dignity for both those who need support in the community but also those who might otherwise grow up in poverty and seek to target those who are different because their own life experiences are so poor.
Will any Cabinet Minister volunteer their one day to work with the youths living on Bardon Road in Barwell where the Pilkingtons lived? No? That’s where they should be going. That’s where the work needs to be done. On Bardon Road and on Bardon Roads throughout the country.
We need to learn from the deaths of Fiona and Francecca. We need to make a better societies and better communities and that can’t be done by brushing things that are less palatable under the proverbial carpet.
- Fiona Pilkington case: police face misconduct proceedings (guardian.co.uk)
- Four police officers to face misconduct hearings over Fiona Pilkington death (telegraph.co.uk)
- Four accused of Pilkington failures (mirror.co.uk)
- Four years on, officers face punishment for failing Fiona Pilkington (independent.co.uk)