How can you have a really, really important government agenda, that makes a huge difference to people’s lives, one that has support across all main political parties… and then put SO many barriers in the way?
And I am not talking about public sector cuts.
Personalisation of health and social care provision aims to put the person in the centre and LISTEN to what individuals want to achieve in their lives. It means people with disabilities being in control, directing their own lives. Sounds sensible. After all, it is what most of us take for granted.
But there are barriers. Many of them have been around since the early days of personalisation. But, rather like painting the proverbial Forth bridge, just as quickly as some of these are removed, NEW barriers are being erected…
In the past week alone, I have heard, first hand, of three lovely shiny new barriers:
Firstly, I was talking to a friend trying to help a home care provider move forward with their thinking. She managed to persuade the provider that, instead of automatically doing things for people, they should think in terms of promoting independence. Some successful trips had just started whereby the carer took the client to the local shops… so far, so good. And then the local council introduced a NEW rule. Anyone taking service users out in their cars needed to have PUBLIC LIABILITY insurance. Show stopper No 1.
Second example. Some service users and carers, who are really passionate about the personalisation agenda, have been working informally with social work and medical students at the nearby university, including running Whose Shoes? sessions. Expenses were paid through a simple system. The lead person normally keeps in touch with me and is very enthusiastic about this work, doing a great job helping students develop understanding and empathy. She had been quiet for a while, so I contacted her. The message came back “We as a group have had to stop our contribution to the degree as they have changed the way they pay expenses (they want us to be employed.)There have been no more sessions …Its not my enthusiasm that’s dampened but the kick in the teeth that’s hard!” Show stopper No 2.
Third example. I attended the Later Life conference recently in London. Manchester was showcased as “A great place to grow older” – I enjoyed the presentation, really inspiring. Ironically, within days, the same city was the subject of a “tweet”: “Manchester is losing its public toilets. Hmm… service pathway breakdown! TIP 01 How to stop older customers visiting your city centre” – via Twitter Show stopper No 3.
Come on, folks! We cannot achieve personalisation unless there is a bit more “joined up thinking”. Even in a time of austerity, we need to go to the loo, methinks!
What a shame for people to want to go out, (all that fresh air, exercise, social and mental well-being, no doubt saving money for the health service at some point) but …they can’t go in someone’s car or, when they get there, can’t find a toilet.
Similarly, how can paying expenses be so difficult? By definition, to avoid tokenism and to be inclusive, “service user involvement” must involve a good mix of service users and carers, not only ones that are “employed”. Likewise, don’t we all take people out in our cars without extra special, costly insurance?
If personalisation, as I believe, means enabling people to lead “normal” lives, this sort of nonsense has got to stop.
Whose Shoes? A catalyst for change in health and social care 
Personalisation was an important government agenda. Now it is an excuse to devolve spending down to the individual, and cripple Adult Social Care and the v0luntary agencies who used to help. When combined with the cuts to benefits, and changes to state support- the personalisation agenda has gone. It is now but a mask for privatising Adult Social Care.
The cuts are going to crucify carers, and those who need care- send people who had jobs to work in people’s homes with little support- and those involved need to stand up and oppose while they still have a voice to do so. These changes are all going through and cumulativly they make a mockery of the personalisation agenda.
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Hi Lisa
Thanks very much for visiting my blog and posting this powerful comment. Obviously the public sector cuts are having a huge impact and social media has a very important role to play in allowing people to post views and collect stories showing the impact on individuals, families and services – eg the “One month before heartbreak” #ombh Twitter campaign, which I have mentioned in a previous blog.
However, I think there is a danger that the cuts can also become the “excuse” for every failure or divergence from the road to personalisation – a road that we must not abandon. In this particular blogpost, I am trying to highlight areas that are not a direct result of cuts (OK the Manchester toilets probably are, but then with something as fundamental as this, it is difficult to keep claiming you are “older people” friendly!)
Ideally I’d like to collect here practical examples of bureaucracy or lack of joined-up thinking causing new and seemingly unnecessary barriers to the principles of personalisation, enablement and choice.
There is also a Twitter hashtag, newly created by @ShirleyAyres, specifically to collect ideas to improve care services: #carecrisis
Hopefully between these two new mini campaigns, we can collect positive suggestions in the form of real examples (things to stop doing and things to start doing) and try to influence decision makers!
Many thanks Lisa – and all good wishes to you.
Gill
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Older adults who might lack capacity or who don’t have family members to advocate for them have been completely by-passed by the promotions of personal budgets. All the training and focus has been on younger adults with disabilities who have more money available to them, likewise, adults with learning disabilities who have larger budgets or older adults who are able to fully engage with the process. There have been few pilots for people who lack capacity to make decisions and in my view, this is a massive gap in delivery. We are being pushed into another ‘one size fits all’ that has enabled those who shout loudest to get the lion’s share of the funding.
I’ve been shouting about this for years but have been completely ignored. I want to be enthusiastic about this process but unless the forms and the SAQs and the RASs pay proper proportional attention to people who have mental health needs, as much as those who have physical health needs, the result will be inequitable.
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Thanks cb
This is a very helpful comment – disappointing but very helpful. This certainly seemed to be the case in the original Individual Budgets pilots but disappointing to hear that you feel nothing has changed.
Someone on Twitter has just made these same points – “exclusivity of pilots. We know they {ie personal budgets} work well with certain groups. Other groups (people who lack capacity) excluded.”
Thanks for your comments. I’m just going to collect them up – not comment or enter a debate. See if we can end up with a powerful set of different “barriers”. Who knows, then someone might then be able to remove them…?!
Many thanks.
Gill
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haha.. it was me that said that on twitter 🙂 (that’s why I wanted to extend the comment here!).
I am a social worker and I work in a specialist CMHT for older adults. I have tried desperately to push the issues of indirect payments and PB for adults who lack capacity but the PB team have constantly moved back to younger adults with disabilities for their pilots – groups that we know that this ‘works’ for. Noone denies this is the case and this was known from the earliest days of direct payments. More work needs to be done with people who lack capacity and it has been dropped because it doesn’t make the ‘fancy progressive case studies’ in the same way.
When I raise these issues at training, I am told that it is because I’m an old-fashioned social worker that wants to block choice. Nothing could be further from the truth. I wrote my Masters dissertation about direct payments – my father received a very successful direct payments package but I constantly see resources for the project hived off to people for whom we know it works already.
In my mind, the SAQ is patronising and almost offensive when you are asking someone with advanced dementia about their hopes and aspirations and it has caused tears for carers who are presented with very insensitive documentation. There just needs to be an understanding that one size does not fit all.
Currently everyone is being pushed into this model and there has been little thought or consideration for people who don’t h ave active and involved advocates and who aren’t able to make all the choices for themselves due to capacity issues.
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Ha, yes I thought it might be – flushed you out! 🙂
You raise some REALLY good points here. I know you are “anonymous” and fully respect that but front-line staff, service users and carers are the ones who have this really first hand, unequivocal experience to contribute and need to be fully involved in identifying and addressing the REAL barriers, as you are doing here. Have you got thoughts about what would work best for the people you mention – and, as you say, ideally any case studies, albeit less “fancy and progressive”? I know what you mean about the wrong questions being asked on paperwork – we have had just the same experience – and it does feel very insensitive to have to plough through lots of questions that are by definition “not applicable” with no option to fast forward to the end or, better still, rip it up and ask some common sense questions based on the actual situation.
I co-manage a LinkedIn group called “The Personalisation Group to revolutionise social care”. We have some really well informed and lively discussions about these issues but are very keen for it to lead to action, rather than just another discussion group. Hard to know the best way of harnessing the power of social media to collect this evidence of what is happening day to day and turn it into something powerful to influence decision makers with common sense rather than more and more “frameworks” etc.
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Thanks Gill.
My problem is that the training that we undertake and our commissioners/policy people don’t want to listen to us. They want to invent their own problems because they have answers to those. We are always told the answer is ‘creative planning’ but we are being provided with smaller budgets and higher caseloads.
All the materials as I say, focus on people who know what they want and actively want to take part in the process. I’ve had people who suffer from anxiety literally burst into tears when I tried to take them through a Self-Assessment Questionnaire as they mentally related it to a DLA form.
I’ve tried completing paperwork on just a plain piece of A4 paper with someone and it is less of a barrier but had that thrown out by our funding panel because it hasn’t addressed all the issues that were needed and had to copy the information given into one of their forms taking about 3 or 4 times as well.
The local authorities are also railroading people into personal budgets – managed budgets if necessary, so the figures can be met but the choice is no greater than it was under the ‘old system’. It just looks better.
I feel very disheartened by the personalisation agenda as I feel it has not delivered what was promised, namely greater flexibility. In my mind, it is very closely related to the cuts agenda, possibly too much.
Older peoples services are suffering as more money is pushed into younger adults who might be able to construct their arguments better.
I feel uncomfortable using LinkedIn at present. It does not allow anonymous commenting and for all my griping, I really do value my job. I have no managerial status and am a bog standard basic grade social worker. I’m also the only wage earner in my household and I can’t afford to lose my job for speaking out on social network sites.
I’ve also been spammed by recruitment consultants incessently when I put my profile on LinkedIn. I’m happy using Twitter and my Blog though – it’s a shame as I would love to be involved in discussions with people who are actually interested in hearing from front line professionals but I would never get that opportunity in ‘real life’ as every time I try to raise some of the real issues I see, i am shouted down as being an ‘old fashioned social worker trying to hold onto the reins of control’ – because noone wants to hear criticisms of the model of personalisation. That couldn’t be further from the truth but that’s why I get so upset about it.
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Many thanks cb.
These are really important issues and from the front-line, which is so important. My whole Whose Shoes? concept is to help people see the key issues from a wide range of perspectives. Clearly front-line workers are in one of the best places to see how things are working out in practice and affecting different people – those who really “fit” the new way of working and those who perhaps don’t, or where things need to be tackled differently.
The “wrong tpe of paperwork” (for anything) is incredibly frustrating (at best) as you struggle to answer sometimes irrelevant questions and leave gaping holes where the stuff that really matters should be.
Over the next week or two, I intend to flag up some of the key points in our LinkedIn discussion group as at least this way you can contribute to our debates, albeit indirectly. Contact me direct if you would like feedback or to keep posted of any key developments etc. Cunning plan, methinks. How does this sound? … PS I like your cat!
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Hmmm interesting views and experiences being shared in this blogspot. I am not sure though where my colleagues in adult services are travelling to or are planning to go. Certainly government interventions and localised unpicking of services in response to reduced budgets is having an effect on directions of travel and levels of uncertainty for professionals at all levels and certainly like the common cold is very catching. All potential recipients of personalised care are to some extent confused and in some cases feeling herded into a new world in which choice for individuals does not feel top of the agenda. Equally it feels true that we are not driving the agenda, not shaping those services and walking or wheeling alongside professionals at any level. The distance between the two parties has seemingly grown and it is the relationship between information and choice that has become the victim.
All groups of budget holders need to a) begin to believe there are choices, b) believe that they can shape their own worlds, c) believe they will not fall down the yawning hole of change and d) believe they can trust their local authority to provide quality guides to provision of services locally. It is the last ask which is by far the prominent amongst members of the third sector and one in which the potential for new and effective partnerships present real opportunities to take the personalisation project forward. Right now those partnerships are patchy, in their infancy or just beginning on their journey. Trust between the third sector and local authorities needs as ever to be developed and worked on locally, regionally and nationally. Right now in many areas, those organisations with the current capacity to support local authorities remain sitting on the sidelines watching the trusted organisations driving along the same old dusty paths and frankly getting nowhere other than to raise the levels of anxiety of large numbers of older and disabled people. Perhaps as time goes by, the dust will settle but in the meantime opportunities are lost to build trust and map an world in which we can feel safer.
Well that off my chest. I am a social work manager in childrens services, I am involved locally, regionally and nationally with a third sector organisation and I am a physically and psychologically disabled person. Personal budgets? I am still waiting! Information, its a desrt out there for may older disabled people who still wait for their maps and guide to reliable, safe services.
Look forward to the continuing debate on this blogspot.
NY
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Gill, you have started something worthwhile in facilitating this discussion. We are faced with the great challenge of joining up service planning and service delivery and establishing true partnership working between all stakeholders. As we know this requires a culture that builds trust through effective communication, transparency, mutual respect, flexibility, honesty and integrity. In this context we can begin to better balance rights and responsibilities in pulling together to make the most of what there is, not only from personal budgets but from us all as individuals, our communities etc. I applaud your focus on the barriers and I sense you also are wanting to draw helpful examples of effective solutions out there albeit not explicit in the topic of the discussion. Brilliant idea, helping me think further particularly from a policy development perspective. Look forward to contributing further and learning from the outcomes of the discussions.
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