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Personalisation - give up or move on?

By Martin Routledge, Alex Fox, Miro Griffiths, Vidhya Alakeson

Introduction

There is lots of discussion at the moment about the state of personalisation in public services. This includes a "failure narrative" with some even suggesting that the delivery of the policy in social care has been largely unsuccessful and its extension into other areas - especially health, is really unwise. Some people have a sense of failure because they are passionate about people getting choice and control and are disappointed that things haven't moved faster or better or included everyone to date. Others believe that some of the mechanisms for delivery are not working or not the right approaches. Some see personalisation as primarily a government driven agenda or cover for cuts and oppose it for these reasons.

At a time of severe cuts, it's understandable how this failure narrative can take hold and starts to undermine support for personalisation. We have much sympathy with these concerns - especially those in the first group. But there is a risk that we forget even in the midst of the challenges, pretty much all outcomes evidence paints a picture of something potentially very positive to be built upon not rejected in favour of…. well we are not sure what. One problem is that no one seems to be coming up with any better ideas.

Asked recently to think about some ideas to drive improvements in personalisation, we did some initial thinking to try to come up with suggestions for policymakers and others. These are outline thoughts and we want to work them up and have them challenged so we can offer the best advice possible. So - here goes - we'd be very interested in people's responses:

Context

We believe that we need a personalised system of health, social care and other public services. For us though personalisation is not the end. Delivered well it can only be one (necessary but not sufficient) means to the ends of independent living, inclusion, and well-being.  Removal of disabling barriers and the establishment of important rights will be key to the change we want to see. For personalisation to make its necessary contribution we need a system which achieves/includes a number of things:

  • It explicitly supports the shift to independent living and inclusion and away from unnecessary and expensive institutional provision
  • It is joined up across health, social care and other public services for more efficiency and effectiveness
  • It is sustainable (in a political as well as economic sense)
  • It supports community and individual strength and resilience
  • Where possible it helps people avoid or delay the need for long term significant use of health and social care services
  • Where people do need long term support they have entitlements to this and can powerfully self-direct it with few hindrances
  • Integration operates not just at the system, service and professional levels but at the individual level in ways which allow the person to self-direct. Integration without personalisation will fail to deliver the shifts towards self-management and individual control which people will come to demand and resource realities require
  • It is delivered by a changing balance of "ordinary" community based support and more usefully focussed professional and provider capacity
  • Is not in the hands of a small number of organisations providing one size fits all solutions (state or independent) but rather a much larger, diverse and largely local market
  • For workers it is not a low value, low skilled experience
  • People using long term support are not dependent on the whims of charity or the uncaring market but neither are they subject to the controls of a bureaucratic state

There are some key barriers to these shifts:

  • Resources are currently allocated to organisations, services, groups and vested interests which silo and defend them in ways that do not start primarily from the interests of the people using them
  • There are powerful cultures and management of change challenges - conservative, bureaucratic and risk averse systems within which the people using services have low levels of power
  • Some real practical and technical challenges - legal, employment etc. -  how do you shift resources "upstream" when you are rationing acute support already etc.
  • People running the system are distracted and frozen by the current resource challenges (though we detect some "burning platform" effects)
  • The public have become used to a "professional gift" model of public services and need support to see the possibilities of a shift to greater self-direction

What kinds of things can help bring the shifts about? A few thoughts

Note: We have listed five areas specific to boosting personalisation. These changes would need to take place within wider system developments, especially including action on building community capacity and resilience and targeted support to help people avoid or delay the use of acute or long term support - there is real opportunity to use the mechanisms of personalisation within these areas but we are not focussing on that here. Additionally there are number of aspects of poor personalisation delivery that need to be urgently addressed - but again we do not discuss these here. The five areas are not in priority order and they inevitably overlap:

  1. Drive co-production into all areas of commissioning and delivery of key local services. Currently nearly all efforts to support public policy change involve investment and attention only on the "supply side". This would require investment in the "demand side" -people, families and communities - to provide them with the information, skills and images of possibility to require and support changes in public services. An expansion of local, interest and national networks of peer support - this includes local DPULOs and trusted sources of support, advocacy and advice from third sector organisations. Also includes investment in support for organisations to establish themselves as social enterprises etc. and be effective businesses/partners providing the things that people need - support planning etc. at an acceptable cost. There would need to be a resource transfer from councils and NHS where some of these functions are currently delivered in controlling and inefficient ways. Using this capacity we could make co-design a non-negotiable across all kinds of commissioning and provision. This implies all public services start with the question "what does a good life look like and how can public and other resources be used to achieve that" rather than "which of our services do you fit into"? (see below for more detail and mechanisms).
  2. Measure the things that are important to users of key public services and use the results to drive local developments. Currently local users of health and social care have only modest opportunity to shape local services to reflect what matters most to them. An example of how to do this is offered by the POET and Partners in Policymaking methods. POET checks the outcomes of personal budgets (or other supports) with people using them, carers, staff, then identifies areas that could be improved and the actions that could achieve this. The findings are taken into stakeholder sessions and put alongside other intelligence to agree impactful and "doable" improvements. Partners/All Together Better offers the possibility of bringing local people into close partnership with commissioners, providers and professionals to agree, own and jointly drive improvement over time.  Such mechanisms would need to be structurally incorporated into local systems (e.g. Heath and Wellbeing Board planning, council and clinical commissioning group strategy development).
  3. Lever and incentivise the development of a very different provider market. This would include the rapid expansion of support options which are currently marginal, combine affordability and offer attractive choices to significant numbers: including shared lives, flexible use of personal budgets to buy "non-service" solutions and activate community capacity. It could involve supporting the significant expansion of co-operatives and other models of not for profit ownership, provider collaborations etc. which limit/reverse the dominance of larger providers. It would require the levering of shifts to local systems of commissioning and provision which incentivise and maximise co-production in allocation and use of available resources and collaboration between a range of local providers of health, social care and housing support and support greater local diversification. It would be crucial that this is not just a commissioner/provider exchange that preserves existing interests - e.g. mechanisms such as community fund-holding which set out required outcomes while offering flexibility of activity/process to local collaboratives. Examples of ways of levering these changes might include a 'right to challenge' for commissioning functions, not just provision; Extension of the Public Services Act principle to give commercial advantage to providers which can demonstrate user ownership and/or employment
  4. Drive integrated personal budgets with a strong focus on those areas which would be of major benefit for people using them while helping to address significant system financial challenges or "wicked issues". There is a potential strong win around long-term conditions/mental health. An early step would be to extend the "right to have" a PHB beyond CHC to people with joint health and social care packages. It would probably be necessary to use strong system levers to avoid marginalisation of PHBs - for example requiring a % of local CCG budgets be used for PHBs targeted in the above areas
  5. Lever and support the re-targeted use of professional skills and capacity: includes linking people to non-professional forms of support, supporting people wherever possible to self-manage, targeting most direct professional support to people in complex and risky situations: Local Area Co-ordination, social work practices shift from care management etc. This would require the expansion of organisational forms and mechanisms which maximise the energy and innovation of key professional, worker and "service user" groups - e.g. social work practices, support for social enterprises of innovative providers, micro-enterprises, integrated professional offers, personal assistant groups etc. It would also need new approaches to professional and leadership training and development to re-orient professional priorities and behaviour

Help!

So what do you think? Are these the right or most important ideas - we'd love to hear your views - please post comments!



15 comments for “Personalisation - give up or move on?”

  1. Gravatar of Tracey BushTracey Bush
    posted 31 January 2014 at 13:28:15

    The difference integrated Health and Social Care Personal Budgets can make is so key to the future of our support to citizens to be in control. Looking forward to the next steps of engaging all commissioners.
    Great blog and very useful for sharing with wider teams.

  2. Gravatar of CarolineCaroline
    posted 31 January 2014 at 13:59:50

    For the many people at ICE and the evidence on social media is vast - I want to say stop obsessing on process and systems it's people that matter.

    No matter what people do to us or say………. it's how it makes us feel that counts. The 280 people who passed through the ICE conference know what good looks like, for many they had never even heard of personalisation….. but they know what it feels like to belong.

    When people speak for the first time in 10 years, when people are allowed to dance in a way which makes sense to them, when people get asked out for dinner to someone else's house for the first time in their lives, when people not involved in the disability movement say I want more of this and when someone has waited over 32 years for their daughter to be included………. tell me seeing people as individuals doesn't matter. This event was seen as extraordinary when it should be simply ordinary!!

    Our driving force was really always about raising the quality of the support people receive - the way we train people, the way we are working to invite communities in, the way we make people feel. So what it ain't perfect, there is still a lot to do but WE ARE MAKING A DIFFERENCE.

    Our lives continue regardless of the debate, you can only do what you can, but you have a responsibility to make it happen after all you only get once chance!!

    Don't bite……..move forward.

  3. Gravatar of Andrew TysonAndrew Tyson
    posted 31 January 2014 at 14:21:36

    Some really important points here. Important we continue to make the case in this time of public sector gloom. One query:

    How do we get resources away from the supply side over to the demand side? Seems to be getting worse as commissioners (LAs and CCGs) and their 'suppliers' retrench? The demand side provides soft targets in a time of cuts. Are Health and Wellbeing Boards one way in?

    Andrew

  4. Gravatar of Patrick HallPatrick Hall
    posted 31 January 2014 at 17:30:00

    Important and timely intervention. Especially agree about embedding co-production throughout the commissioning cycle. This means radically challenging the commissioner-as-expert paradigm. It also means calling for a deepening of local democracy and direct collective participation of citizens in budget setting, planning and delivery.

  5. Gravatar of Neil CrowtherNeil Crowther
    posted 31 January 2014 at 18:42:03

    Great piece - lots of interesting ideas. I think the problem you identify is that of having focused too narrowly on the transactional relationship between 'user' and 'funder' - much of your proposals are not about that at all, so perhaps what we really need to do is reframe the debate by focusing on the end-goal and avoid mis-attributing the problem as being with personalisation per se, but as not having attended to the wider dimension of what allows a person to lead a self-directed life. So OI think to move on we need to restate the end goal as being inclusion & reappraise from that perspective. As you say 'personalisation' is but one dimension of that & its success rests on all manner of things lying beyond its reach (not least social connectedness/networks). Hence for me, 3 & 5 in your list of suggested ways forward are the biggies (though I don't think focus on a 'provider market' is helpful - we should be promoting a diversification of solutions, not a diversity of 'providers.' One idea I have also proposed is that of an 'Access to Living scheme' supported by new institutional architecture in the form of Access to Living Cooperatives, co-led by disabled people & their appointed advocates and reps from local statutory agencies - more here http://makingrightsmakesense.wordpress.com/2014/01/04/refreshing-the-disability-rights-agenda-a-future-imagined/

  6. Gravatar of Clenton Farquharson Clenton Farquharson
    posted 31 January 2014 at 20:38:23

    I am 100% in agreement with this, and the aspirations described.
    It's about reclaiming the narrative around this,making this a reality as suggested.
    I think this blog is a very good way to articulate and redefine those principles and values and terminology that inform personalisation within your narrative described.

    In my experience the five areas your blog specifically reference to boosting personalisation mean very different things to organisations, professionals,people who use services, carers and family's than they do to bureaucrats, finance officers and government officials. The notion of 'co-production' that your blog describes goes some way towards providing a framework to achieve a stronger voice for people who use services, carers and family's although many people involved locally have dismissed the term as jargon and say that what they are doing can be more simply defined as 'working together'. The changes you mention within the wider system developments, especially those that action building community capacity and resilience and targeted support to help people avoid or delay the use of acute or long term support show what true personalisation is about. Most people who use services, carers and family's would echo this mechanism of personalisation. This should be the new narrative of true personalisation and more air time and conversation needs to happen around this. This is what I and many other people who use services, carers and family's would like to see upheld in the pursuit of personalisation described and articulated in this blog.

    Excellent conversation starter.

  7. Gravatar of SheroneSherone
    posted 31 January 2014 at 21:57:09

    This message is so powerful. My emotional responses are mixed, confused even. I make no apology for stating that this effects me emotionally especially as the provision of a personal budget, designing a personalised support package, have been mechanisms that, along with sheer grit and determination have saved my son's life. Yes, while joyful and grateful that my son survives and lives his life, the journey to this point has been difficult and a real struggle (and continues albeit at a lower level). My sadness comes from knowing that my struggle is not isolated, there are many similar stories of struggle out there. On the other hand, mine is a story of success, proof that personalisation works. It worked because being a social care commissioner at the time, I had full working knowledge of the system, the language and expectations. I knew what to fight for.
    So for me, coproduction is the ONLY way forward. Knowledge IS power. Inform and teach everyone, demystify processes, bust the myths, simplify the language, ban JARGON. Trust providers, allow 'non-service' solutions to be on support plans as legitimate spend if it genuinely meets needs and delivers outcomes.
    It must be a scary prospect creating a what some would see as a 'demanding community', but this isn't about entitlement and spending more or what we haven't got, it's about shared solutions and shared choices and listening to what people say they need and believing them. Making It Real is a great vehicle for this.
    Things are changing, slowly, but most definitely, surely. Coproduction is being modelled, please continue to showcase it and build momentum in communities. Independent living can only come when people EXPECT independence. Independence is about 'what can I do for myself' along with 'what can you do with me' .
    There's so much more to say but for now, I am proud personalisation works for my family. I just wish I didn't have to fight for it. Hopefully one day soon the battle will stop and I won't have to.

  8. Gravatar of Heidi De WolfHeidi De Wolf
    posted 02 February 2014 at 16:07:37

    Within this article lies the answer. Personalisation, if focussed on independent living, could inadvertently lead to isolation when paid services are not available.

    What has been missing from the start is an equal focus and commitment to improve community cohesion and understanding the principle of living interdependently. Every person has something to give!

    Councils have not got their head round how to work with and empower their community, breaking the culture of learned dependency on the state and reducing/removing bureaucratic barriers that stop communities from setting up micro businesses that can support those in need of care.

    It is funny we call the Councils services Social Care yet rely so heavily on 'experts' to make social truly social, when all is needed is a different approach of dispersed power which re-builds trust in local communities.

  9. Gravatar of The MotherThe Mother
    posted 02 February 2014 at 17:29:56

    Well it all sounds very nice but ignores the fact that most people get nothing! No funding, no support, no budget. Go near the service providers for help and they crucify you. How dare we think about getting support when they need the money for coffee and biccies!

    What we really need is a system where people are entitled to support and budgets etc rather than at the him of some idiot in an office - in our area you get help if your face fits - if your face doesn't fit you get nothing but harassment and bullying.

    Start again and make support and funing mandatory - that way everyone will get a fair slice of the cake!

  10. Gravatar of Jayne knightJayne knight
    posted 02 February 2014 at 20:15:26

    There are some very well thought out responses and points in these messages and of course the blog. Personalisation has to enter the hearts and minds to be the way we are all in society. A person just using a personalised way of being present and connected. You would think that would be simple. When it is done simply it is extremely powerful because everyone has understood the message. It has to liberate itself in this oh so overcomplicated system so people too can be liberated
    Its not about money, its about far more Han that. All of us know how to make the money work and if people trust each other this way of being can have amazing advantages.
    I fear that the negative action is to stop a movement of such value succeeding. I fear it in danger of being splintered and therefore division leads to centralisation again.
    It mustn't be taken over by providers who claim to walk the talk when they just jump on bandwagons. We need to work locally to strengthen what is there, but we must also remember the many who have no families or voices too and ensure that they are brought firmly into everyone's focus. I don't know what I would do if it shifted all backwards. I would feel a lifetimes work had been for nothing if a better future for all became consigned to history. United we stand. It's a civil rights matter not to be taken lightly.and worth fighting or tooth and nail. Don't complicate it by too much process, win hearts and minds.

  11. Gravatar of Jon HyslopJon Hyslop
    posted 03 February 2014 at 14:47:45

    Thanks for a timely and considered post. I think we also need to think about the 'social contract' and try to bring the public with us.

    I agree that the way that health and social care services protect budgets is unhelpful, but also think that (particularly in the current economic climate)some protection is better than none. Moving money from 'supply' to 'demand' will is already making cuts easier - for example campaigning against a 5% IB cut is inevitably harder than campaigning against service closures, partly because the public can't imagine what a 5% IB cut looks like.

    In the longer term I'm also worried that the public may come to see IBs as just another benefit. The NHS enjoys far higher levels of support with the public than for example DLA/PIP, so this is important.

    I don't have any clear idea of how we should achieve any of this, but wanted to join the debate.

  12. Gravatar of Mike SteelMike Steel
    posted 06 February 2014 at 00:40:26

    Yes, people are doing excellent things on a local level and there are examples of personal budgets etc working really well for some people. Other people are lucky enough to have people around them with endless energy and resources who speak the same ‘language’ as the professionals and local government. But for the majority of Disabled people, their families and carers ‘personalisation’ is not happening.

    What ‘personalisation’ originally meant and how to make it happen came out of Disabled people challenging the existing systems and hierarchy. To label people as ‘negative’ or infer they should not raise debate or question people more powerful than them is wrong.

    Not only has it being hijacked, but the systems and process essential for real citizenship and actual change are flawed and another barrier to independence. Some of this should be dealt with in legislation, but you can be sure that The Care Bill, in its current state, is not the answer. ‘Personalisation’ is supposed to mean that Disabled people, their families and carers are directly involved in decisions about how services are designed and run, the big stuff and the nuts and bolts. When and where is this actually happening? You can not talk about ‘choice and control’ without thinking in detail about the current lack of practical, financial and legal support to get on and do this. Read Mark Neary’s excellent blog for a heart-breaking, real example of this.

    I agree that no-one should be wasting time arguing and stop any move backwards, but as Jenny Morris points out in her blog and on this very website, there is also a real danger of forgetting what Disabled people fought (and still fight) for: basic human rights for all of us.

  13. Gravatar of Mary Mary
    posted 27 February 2014 at 08:31:16

    Interesting reading but divorced from current reality where cuts are pushing us further and further away from the ideals expressed. One Local Authority has now gone as far back as not allocating people a budget, the Social Worker will do an assessment but nither they or their manager know what funding may or may not be allocated. Everything has to be "best value" which means everything has to be the cheapest option as long as its considered to meet assessed need. People are being moved out of supported living and ...into residential placements because in some cases, because of the level of continual support needed, it is cheaper. On paper of course the authority will insist that of course personalisation continues...
    This is all down to government funding cuts not because anyone wants the system to operate like this. Please can everyone face facts about the state of local authority finances and focus the fight from there ?

  14. Gravatar of DebDeb
    posted 23 March 2014 at 12:56:23

    I completely agree with Mary. I have a 26 year old daughter with a learning disability. Some 5 years ago we were involved with in-control training provided by my local authority. It was flavour of the month to get people on board with personal budgets. For 2 years it worked really well and enabled us to choose the correct support and gave my daughter the opportunity to live her life as any other young person. However, when she moved into supported accommodation 3 years ago with 3 other people we were told that she could no longer have a personal budget as support would be provided by one provider paid for by the local authority. Since then things have gone drastically downhill, and currently due to the cuts we are faced with a reduction in support hours which will affect her quality of life and her ability to have the same choices as everyone else. Tendering care out to providers is a dangerous thing as they are only interested in making a profit, and the reduction in monies available to them from local authorities reduces the quality of care. Many support workers looking after the most vulnerable people in society are paid minimum wage and lack the qualifications required. We seem to have come full circle and are now back in the same position we started, having to fight and campaign for sufficient support to meet needs. It is a constant worry for parents and very wearing having to put up a fight all the time. I am beginning to lose faith in the whole system!

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Last Updated : 31 January 2014. Page Author: Laura Bimpson.