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    Updated to include a tribute from the Friends of Le Monde Diplomatique (link at the end of the article)

    To his friend, the warm and wise novelist, poet and activist, Susanna Mitchell, both members of SHA.
    Reprinted from Camden New Journal 22nd July 2021. http://beta.westendextra.com/article/beware-flying-too-close-to-the-sun

    The sad news came from Susanna Mitchell’s family on the afternoon of July 7th – “Susanna has passed away peacefully at the Marie Curie Hospice,” after a long illness.
    Susanna was born and educated in Ireland. She was a novelist and poet, an activist and teacher with a background in political philosophy. Her novels include The Token, shortlisted for the Yorkshire Post Prize, and The Colour of His Hair, which addresses the problems of her native Northern Ireland.
    She taught politics and political thought in the Social and Political Science Faculty at Cambridge University, and later was a Fellow of the New Economics Foundation. There she worked with the Global New Economics team on international debt and immigration, the power relations between these issues and the political arena, and their impact on health care systems in the so-called developing world.
    In retirement she was active in local politics, with a focus on campaigning against the privatisation of the NHS. She was a member of KONP (Keep Our NHS public) and the Socialist Health Association, and an SHA delegate to Holborn and St Pancras Constituency Labour Party General Committee.
    Susanna had gone into the Marie Curie Hospice towards the end of 2020. But she recovered sufficiently to move back to her family and home in Highgate.
    In the spring of this year she was well enough to meet up on Parliament Hill Fields. It was a warm sunny morning. She and I walked into the park, and Susanna directed us to a wooden bench that was sheltered from the wind by high bushes. The bench gave a spectacular view over London.
    We chatted – and laughed – about all sorts if things, both personal and political. For example, friends and comrades were very concerned about the Centene Corporation taking over some of the general practices in Camden. Susanna and I had previously collaborated on a number of articles about this sneaking privatisation of the NHS for the CNJ. But friends’ concerns about Centene were surprising.
    “They have seen the articles, but this is a new outrage to them.” Susanna said of her friends, “and they work so hard, and they’re all so good…”
    Feeling like Cassandra, Susanna confirmed: “It’s not that they don’t believe these things about the NHS, they just seem to forget them. It’s like a kind of amnesia. This means that each new revelation about privatisation feels fresh to them: it’s a new outrage.”
    We stopped talking and turned to look over the fields that sloped away in front of us. Although it was a warm and brilliantly sunny day, there were just a few people walking on the fields. We watched as a lone cyclist walked to find a good spot for sunbathing. He took off his shirt, laid down and basked in the sun.

    Susanna was a poet as well as an academic and activist. Without discussing the poem we silently acknowledged WH Auden’s poem about the fall of Icarus, caused by flying too close to the sun. Down on earth, this poem says, we go about our daily lives with an indifference to disaster.
    This day’s disasters were personal and political. The young man sunbathing could be unaware of concerns about the coronavirus pandemic, and how healthcare systems around the world – including our NHS – were being overwhelmed. And, although the day was idyllic, Susanna knew that meeting friends like this on the Heath would not last. We turned back to look at each other. We were suitably spaced apart at either end of the bench.
    “You look well,” I said.
    “Yes, people say this, but I’m in some pain,” she replied.
    Her eyes sparkled as she smiled. She was wearing some fine and delicate jewellery, and her handsome face was framed by them as well as the fine shirt and jumper.
    We carried on talking and smiling about so many different things.
    And then it was time to part. We walked back to Highgate Road and said goodbye.
    “Lots of love,” called Susanna as she walked towards her home. I carried on down to Kentish Town.
    As I walked, I remembered a phone conversation I’d had with Susanna. Perhaps it was her elegant outfit that reminded me, and I smiled as I recalled the day the phone rang.
    Susanna laughed as we said hello.
    “What’s happened?” I asked.
    “Oh goodness”, she said, “you’ll never guess. I was going to have a busy day and I was just getting myself ready when the doorbell rang, but I was only half way into my jumper.”
    She said she hadn’t quite got the jumper over her head because of the arthritis – she laughed again.
    Who could be ringing the bell? – she wondered – it might be important. No one else was at home so she had to answer it herself. She struggled down the hall and opened the door.
    She couldn’t quite see through the jumper – she told me – and only then realised how funny this looked. The callers must have been shocked and amazed to be confronted by someone answering the door with a face completely covered and an arm stuck but desperately trying to get into a position to find the sleeve.

    Knowing Susanna, she probably said – through the material – and in a sweet but serious voice: “How can I help?”
    Susanna was always helping. She was loving and kind to everyone. And she was supportive of all the people she knew. She worked hard to make a difference for the better.
    Whether for family and friends or in politics and society in general, she always made a difference for the better – even with her head stuck in her jumper!

    https://www.amis.monde-diplomatique.fr/Tribute-to-Susanna-Mitchell.html

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    The Local Government Association has released a statement that 91% of 600 councillors support a campaign for reform of social care launched by a partnership called Social Care Futures. As part of re-building society post-pandemic, their campaign calls for social care to serve the purpose of enabling people in need of care and support to: ‘live in the place we call home, be with the people and things that we love, in communities where we care about and support each other, doing the things that matter to us’.
    This is a warming vision whose worthiness few will dispute. But before committing to it political leaders are likely to want to know the cost. The Chancellor will certainly want to know the cost before his colleagues commit. However, with this vision so different from the current realities of social care, testified by the 500 people who responded to a survey by Social Care Futures, the cost is simply not known. All that Social Care Futures can say is;‘Government resources must be increased to the level that allows people the funding they need to live a life like other people’.

    Social care has not lacked for a vision similar to this for a long time. The most recent is a vision based on wellbeing in the Care Act of 2014. Before that the ‘personalisation’ agenda of the noughties. Neither have happened, with sector leaders claiming lack of funding.
    But there is a chicken and egg situation. While social care leaders say they cannot deliver a visionary service without more money, in the absence of the vision being costed, political leaders will not give sector leaders more money. It is an impasse.

    Breaking the impasse – a parallel campaign
    Coincidentally there is another campaign to reform social care concurrently being launched. It has been developed by a national collaboration of disabled peoples’ organisations. Included in its proposals is a route to break the impasse. It comes in the form of endorsement of the principle of ‘progressive realisation’ of the resources required through ‘concrete action’. This is a concept taken from the United Nations vision of Independent Living, which is a vision almost identical to Social Care Futures’ vision. The UN recognises that the resources required for people to lead the lives right for them is a political matter, not a legal right. Much as we may like the world to stop still while social care gets the funding it requires first, it is most unlikely political leaders will be so moved by the Social Care Futures vision that that will happen. The concrete action that must be taken is the key.

    Concrete action

    The action required to make progressive realisation a reality relates back to the very reason why social care leaders do not know how much it would cost to give people the lives they should have. In the NHS, clinicians diagnose and recommend treatments based on what they see before them. Waiting lists act as the financial safety valve if clinical need outstrips resources at the operational level, and as the weather vane and information source for funding requirements at the strategic level.
    This is not so in social care. Resources determine what is recognised as ‘need’. Managers determine ‘eligibility’ thresholds in order to ensure demand matches the local budget. It is the reason why sector leaders have no idea how much it would cost to resource the Social Care Futures vision or any other vision.

    The action required is to abolish the resource led definition of need – the eligibility process. Councils must require their front line practitioners to identify and cost all the needs each individual has to live the life described by whatever vision is adopted. On a case by case basis, councils must decide what can be afforded and what cannot. The needs unmet must be aggregated and put in the public domain. In this way, unmet needs in social care can sit alongside waiting lists in the NHS to inform future budgets. This is an approach that has recently been adopted by the Equality and Human Rights Commission (please see link below). It recommends the Secretary of State should periodically set out plans to close the gap between needs and funding.

    Delivering change – problems for Social Care Futures
    At the core of the action required is the axis between needs on the one hand and resources on the other. A founding principle of the NHS was that need must precede resources. In social care, from the outset, the opposite applied. The concrete action required is to reverse the polarity putting social care on the same basis as the NHS. Whilst simple in concept, it will require a change in the both the culture and modus operandi of the way councils deliver their part of the social care system that will shake the system to its roots. But this creates a problem for Social Care Futures. It is a partnership involving the key leaders of the sector – the LGA, the Association of Directors of Social Services, Skills for Care, Social Care Institute of Excellence. But the sector consistently and collectively denies the need for change in the way councils operate, citing only lack of funding as preventing them from delivering the personalisation vision.

    But the evidence not only undermines this position, it points to a seriously dysfunctional system;
    • In 2009/10 (at 2019/20 prices) £21.4BN was spent on social care, which included £1.3BN of NHS money. In 2019/20, £22.4BN was spent, which included £2.3BN of NHS money. Spending in real terms has thus actually increased by about 5%.
    • Whilst sector leaders point to increased demand from increased demography thus suggesting an effectively cut, they are silent on levels to which demand has – or should have been – reduced.
    • One of the selling points of the personalisation agenda was that it would reduce demand. By matching resources to the personalised needs of individuals, better outcomes at lower cost would follow.
    • Over the past decade the sector has proclaimed great success in delivering a range of demand reduction strategies. Chief amongst them has been what is called ‘strengths based practice’, designed to eliminate the dependency on services. However, while all councils have adopted the practice, sector leaders offer no information as to how much this may have saved.
    • In 2009/10, 1.7 million people were served. In 2019/20 that had reduced to 1.1 million. Spend per service user has therefore increased by some 35%. Why does the Social Care Futures survey find people seriously under-supported?
    • According to the LGA’s own figures, shared confidentially with councils but not released to the public, the highest centile of councils spent 60% more than the lowest in 2018/19. However, there is no suggestion that the highest spending councils have broken the mould any more or any less than the lowest.

    These figures point to a dysfunctional system. Until and unless sector leaders acknowledge as much and the parts they have played in its design and delivery, they will remain a central part of the problem, not the solution.

    Conclusion
    The immediate needs for increased funding within the existing system are beyond dispute. In particular the low level of pay for the care workforce and the unfairness of the charging regime and pricing that risks market collapse should be addressed without delay. However, hopes for funding levels beyond the immediate that rest on the belief that government will be so moved by a new vision that it will commit regardless of cost is at best naïve. Worse, how can government have the confidence required to entrust new funds to a sector so dysfunctional and incapable of making best use of the resource it already has.
    It is easy to sign up to Social Care Futures’ vision. Who wouldn’t? But if we want a system of social care driven by that vision, or any variation of it, it will only happen if government listens more to the call for the fundamental systemic change that the disabled peoples’ movement includes in its agenda for change.

    1. https://www.equalityhumanrights.com/en/inquiries-and-investigations/inquiry-challenging-decisions-about-adult-social-care

    Colin Slasberg is a social care consultant

    This post makes an important contribution to the debate on the provision of social care in England and is not a reflection of the SHA’s policy.

    4 Comments

    Many readers may be aware that this is a major issue, but I am going to do my utmost to condense its main aspects into this blog. Obviously different people will have a varying spectrum of knowledge on this subject, but I am writing here from the perspective that many might be unaware or have limited knowledge of the issues involved.

    What is a PEEP?

    PEEP stands for a Personal Emergency Evacuation Plan. Its purpose is to provide people who are unable to self evacuate unaided from a building, or to a place of safety, with a plan to help ensure that they can.

    Not everyone identifies as disabled or with a health condition, and whether they do or not, some people may not realise that PEEPs exist, or that they could benefit from one. I know I didn’t.

    Some might need a PEEP for a temporary period, e.g. while they have a broken leg, whilst others need them long-term, and the PEEP may need to be updated as needs change. I would argue it is in everyone’s interests for PEEPs to be readily available, not only as a principle, but also because nobody has any idea if they might need one, either on a short-term basis or permanently. I have not been disabled for most of my life, for instance.

    Brief Background

    It is utterly shameful, to put it politely, to think that 42% of those who lost their lives in Grenfell were disabled. None had PEEPs, and it seems to me there has been no will by Government or those who make such decisions, to even try and increase access to PEEPs.

    Four years on, and only now has the Government recently opened a consultation. This has been due to what has (and continues to) come out of the Grenfell Inquiry. It isn’t an easy listen or read. More poignantly, bereaved families, survivors and others have fought the injustice throughout, including going to court over this major issue. That should never be forgotten. We would not be having this consultation otherwise, even though it has taken far too long.
    It should also be noted that PEEPs are nothing new: they have existed for decades. Although I think it is clear that current law legislates for them, arguably this has been and is being continuously contested by various parties. Due to the current situation, as described below, I will not focus on that here, for reasons that will hopefully become clear.

    My Experience

    When major fire safety issues were found in our building, our evacuation procedure changed from ‘stay put’ to simultaneous evacuation. It was assumed that all of us could self evacuate. Those who could not were not even considered, let alone acknowledged. Maybe it did not occur to those involved in making this decision? So installing a Gerda box (secure and fireproof for the storage of PEEPs) turned out to be pure tokenism. Initially it gave me hope, thinking that finally we were going to have PEEPs stored where the Fire and Rescue Service could easily access the necessary information. I had been refused a PEEP countless times and advised that I needed to ‘stay put.’ That because I am disabled I would have to wait to be rescued, while my neighbours, who can self evacuate, should do so. But I had to wait.

    Can you imagine being told that? Many disabled people will have been told this already. I know people who have. Sadly, more people have a similar experience than a positive one. Something else to have to fight for on top of everything else, when some of us are also at risk of losing our homes and having no choice but to declare bankruptcy, due to the huge fire safety remediation work that would be necessary, and other associated costs. The failure to include the cost of complying with a PEEP assessment in the service charge shared by everyone is discussed later.

    However, a company kindly undertook a PEEP assessment with me, without charging a fee. As a wheelchair user with complex needs, including support to leave their flat, the PEEP advised a specific model evac chair that I would need to safely evacuate with a ‘buddy.’ In my situation, my ‘buddies’ include: my partner, my Personal Assistants and neighbours. If nobody is with me and there is a fire, I can contact neighbours via text. I keep my phone near me at all times in case.

    This advice was not accepted by my managing agent, management company or the Fire and Rescue Service. There was not even a discussion, just people in offices or zoom meetings, making this decision without me. Not a trivial decision, but one that could, in the event of a fire, leave me injured or worse. This is about all the lives unnecessarily lost already, about my life and anyone’s who can’t self evacuate. It is about all those people who have lost loved ones and those who care about disabled peoples’ safety. It is yet another example of disabled people not being classed as equal. Classic ableism.

    If able bodied people were told that they had to be rescued and only disabled people could evacuate first, do you think that would be accepted? Do any of these people making such decisions wonder what it would be like for them or someone they care about to be in this situation? Physically trapped and in my case, as in many others, in a building that was built unsafe. This obviously increases the risk of a fire and therefore of injury and death.
    If the building had been built to higher safety standards, then I feel that the risk of living on the third floor is a reasonable one for me. Others may disagree with that, but then to ‘stay put,’ in my experience, either before I became disabled or after, was standard and I wasn’t aware of other options. Now the situation is very different and yet I, like so many others, are plainly refused.

    Such a decision made me feel extremely upset, angry and as previously explained, that my life and disabled peoples’ lives aren’t viewed as equal. We know this already, but even in such serious situations, it is often the case. Surely being rescued should be a last resort, not your only option. For some people there might not be an alternative or one they feel comfortable with, and/or some may prefer to be rescued. For me and so many others, that is not the case.

    There should be financial support for aids and adaptations to enable evacuation. As a reasonable adjustment, disabled people should not legally have to pay and the cost should not be added to service charges. It should apply generally, let alone during the current building safety crisis. Having huge bills, or expecting them, is a recipe for disaster and can lead to hate crime. I have known it to happen: disabled people being targeted by those worried about their precarious financial situations. This can and does happen, whether people are impacted by the building safety crisis or not.

    This has not been my experience, although my management company made me aware that if my PEEP was accepted, that it would be added onto the service charge. The recommended equipment tends to not be viewed in the same way as installing a new door, a new light, or having car lifts repaired. Not everyone uses everything that is included in the service charge, but evacuation aids are seen differently from other things included. Up to a point, I understand, as it should be classed as a reasonable adjustment, but anger should not be directed at the disabled person. There should be a central fund that people can apply to, and PEEPs need to be offered as standard. In some places they are, in Oldham, for example: but this is not typical by any means. If the Government is really serious about reducing fire risk to a vulnerable group of people, then they need to provide adequate funding. Local councils cannot be squeezed even more.

    In addition, PEEPs should be made available to anyone who cannot self evacuate, regardless of building height. Currently the Government are focussing on buildings 18 metres and above. PEEPs should be person-centred and not building-centred. Fire does not discriminate in terms of height. If you need help to evacuate, then you need help, however high the building you live in.

    So after a lot of thought and in desperation, I decided to crowd-fund for the evac chair. Within 3 days, mainly people I didn’t know kindly donated enough to reach the target amount. A couple of days after, the evac chair was delivered and my buddies have been trained how to use it.

    I’m only one person impacted, but not everyone can crowd-fund for equipment – and nobody should have to, under any circumstances. It is shameful.

    My fear was that without a plan there was a risk of injury or death, either to myself or others trying to help me, who would not feel able to leave me behind. This is not just about me, but about people who care about me. Now I have a plan and appropriate equipment, that reduces the risk to all. Several months back we nearly had an electrical fire, which made the potential situation even more real to me. We did not have to evacuate, but it made me even more aware of the fact that I could not even if I needed to. This petrified me and the feeling has stayed with me. Hopefully there will not be a fire, but if there is, I am as prepared as I can be though my management agent still has not accepted my PEEP, or acknowledged that I need one.

    Who are Claddag?

    Claddag is a Direct Action Group for Disabled Leaseholders and those with health conditions, impacted by the building safety crisis/cladding scandal. I am one of the co-founders. I was painfully aware that disabled people were not being considered or included in any part of the response to the building safety crisis and not only wanted this to change, but believed it had to. Another disabled activist, Sarah Rennie, was trying to do the same and although we’ve never met in person, via social media we founded Claddag.

    Obviously PEEPs impact a much wider range of people than those at whom Claddag is primarily aimed. It affects people in different circumstances, across housing tenures, whether impacted by the building safety crisis or not. So part of our campaign is focusing on PEEPs and this consultation is extremely important. It will inform legislation that is vital to those who need evacuation plans.

    Further to our open letter, we are making progress!

    The Government has been forced to think again on whether disabled people have the right to an evacuation plan within blocks of flats. Here is a recent Channel 4 report highlighting the dangerous situation disabled people are in, and the refusals of landlords/agents to agree evacuation plans.

    Call to Action – How to Help?

    The consultation on evacuation plans (known as ‘PEEPs’) has a short window for response. We know there will be a lot of opposition and so it is vital that disabled individuals, allies, MPs, DDPOs and charities make their voices heard. We need as many responses as possible.

    We are simply asking for:
    • PEEPs for every disabled resident
    • PEEPs must be the responsibility of the Responsible Person
    • PEEPs must be clear and accessible
    • PEEPs must be secure and up-to-date

    We are happy to distribute our draft response to anyone who might find it useful. If so, please contact us. Our contact details are on our website (link included below). The deadline to respond is 19 July 2021. Examples of lived experience is invaluable, so please encourage the groups and individuals you know and/or meet to respond.

    Some disabled people are struggling to get the consultation in alternative formats, so please let us know if you hear anything concerning that, which we should raise with the Home Office.

    Any questions please let us know. It would be very, very helpful to know if you do submit a response.

    More materials/stories about the impact of the building safety crisis can be found on Claddag’s website (https://claddag.org/).

    URGENT

    PLEASE FILL OUT THE CONSULTATION (LINK BELOW) BY July 19th ESPECIALLY IF YOU ARE A TENANT and/or LIVING IN A BLOCK OF FLATS, and/or A TENANT and/or LIVING WITH A DISABILITY!

    The consultation on evacuation plans (known as ‘PEEPs’) has a short window for response. We know there will be a lot of opposition and so it is vital that disabled individuals, allies, MPs, DDPOs and charities make their voices heard. We need as many responses as possible.

    We are simply asking for:
    • PEEPs for every disabled resident
    • PEEPs must be the responsibility of the Responsible Person
    • PEEPs must be clear and accessible
    • PEEPs must be secure and up-to-date

    We are happy to distribute our draft response to anyone who might find it useful. If so, please contact us. Our contact details are on our website (link included below). The deadline to respond is 19 July 2021. Examples of lived experience is invaluable, so please encourage the groups and individuals you know and/or meet to respond.

    Some disabled people are struggling to get the consultation in alternative formats, so please let us know if you hear anything concerning that, which we should raise with the Home Office.

    Any questions please let us know. It would be very, very helpful to know if you do submit a response.

    More materials/stories about the impact of the building safety crisis can be found on Claddag’s website (https://claddag.org/).

    5 Comments

    WELSH SOCIAL CARE PRIOIRITIES ANNOUNCED.



    The Welsh Government Social Care Minister, Julie Morgan MS, had just published the Welsh Labour Cabinet’s immediate priorities in progressing social care in Wales. A key element is the step to recognise the important role of the social care workforce, both paid and unpaid, in service delivery.

    In addition the Welsh Government has announced that it will be appointing a Chief Social Care Officer who will work with the Chief Medical Officer and the Chief Nursing Officers for Wales. This is a very important step which should provide an important strategic boost to the development of social care.


    **************************************************
    Following the recent publication of the Programme for Government this week, Ms Morgan was pleased to provide Senedd Members with an early update about on the Welsh Government plans and priorities for social care.

    The challenges the pandemic continues to bring to the social care sector and of the need to support it to recover. A social care recovery framework before summer recess, which will set out the Welsh Government priorities for recovery. The framework will build on Improving Health and Social Care (Covid 19 Looking Forward), which was published in March.

    The recovery framework is being developed in collaboration with partners across the social care sector.

    The Welsh Government ( WG ) will:

    Ensure the core of our recovery planning is focused on rebuilding wellbeing, reducing inequalities, widening participation and creating an inclusive society;
    Support people with Long-Covid, including in terms of increased demand for social care provision;
    Continue to ensure the risk of Covid-19 entering care homes is minimised and visiting is maintained safely;
    Address the adverse impact Covid 19 has on unpaid carers;
    Work with the Social Care Fair Work Forum to improve terms and conditions for the social care workforce and ensure there is a continued focus on supporting wellbeing and mental health;
    Work with partners to shape a future funding approach to enable commissioners to respond to changing population needs to secure care and support for the future;
    Harness and build on the improved collaborative working across health and social care we have seen during the pandemic to drive improvement.
    It is critically important that we use this recovery period to lay the right foundations for the future of social care in Wales, in line with our longer-term ambitions, which are set out in the Rebalancing Care and Support white paper.

    Minister Morgan will be providing Senedd Members with an update on this work in the next two months.

    A key commitment for this new government is to introduce the Real Living Wage for social care workers. The WG wants to create a stronger and better paid workforce, which will be the bedrock for delivering better services.

    This can only be delivered in social partnership, through the Social Care Fair Work Forum – with the WG wanting  to ensure additional funding for social care to implement the Real Living Wage reaches the pockets of social care workers. This is a priority area of work.

    As an early sign of the Welsh Government’s intent, it has established the post of chief social care officer for Wales. It will be a strong voice for everyone working in the sector, supporting the wellbeing and development of the workforce, promoting improvement and reform, and providing national leadership and promoting esteem for all those in social care roles.

    A former social worker with a career spanning 33 years in social care in Wales, Albert Heaney has taken on this role and responsibilities alongside his current Welsh Government policy lead for Social Services. In parallel with the similar roles of Chief Medical Officer and Chief Nursing Officer, in this new role, Albert will provide leadership for the sector within and outside Welsh Government, providing impartial and informed advice to Welsh Ministers on priorities for change.

    After leading policy on the transformative Social Services and Wellbeing (Wales) Act and the Regulation and Inspection of Social Care (Wales) Act, Albert will build on this experience and expertise, bringing together contributions from social care voices and social services providers, working in meaningful partnership, to co-produce results for the future.

    Minister Morgan paid tribute to everyone working in social care – who have gone above and beyond to maintain a professional, high quality service during the pandemic. It is essential that these  voices are heard as we put in place recovery plans and move forward with our ambitious plans for health and social care this term.

    The new chief social care officer for Wales is a valuable contribution to this agenda and will make a real difference to all who work in, as well as those who benefit from, social care in Wales.


    https://gov.wales/written-statement-progressing-governments-social-care-commitments

    2 Comments

    The Equalities and Human Rights Commission has published a document setting out how independent living, as defined by the United Nations’ Convention on the Rights of Persons with Disabilities, can and should be written into domestic law. The document addresses the breadth of issues relevant to independent living, including recommendations relevant to such as transport and housing. As far as social care is concerned its recommendations describe a route to a newly envisioned but financially sustainable future built to deliver independent living.

    What is independent living?
    It is first important to understand what the UN means by independent living. It is firstly about living in the place of one’s own choosing, whether in one’s own home or communally, and secondly being able to make all the day to day choices that non disabled people take for granted. It applies to people of whatever age and whatever their impairment of body or mind. It applies as much to an older person wanting to choose the time they go to bed as to a younger person wanting to make their full contribution to society. In other words, it applies to every person in need of care and support.
    This is a different understanding from its original meaning created by the disabled people’s movement in the 1980’s. In relation to care and support, independent living was an alternative service model whereby the person managed their own support staff in their own home. Made possible by the 1996 Direct Payments Act, it has been a very successful model in the 25 years since for people with the skills, energy and time to make it work.

    Independent living and wellbeing

    The Commission notes the close relationship between the wellbeing principle of the Care Act and independent living. If a person can tick all nine of the wellbeing boxes of the Care Act – including as they do control over the person’s life and services, dignity and living in a home of their choosing – they will have independent living.
    How can it realistically happen?
    Resources are, of course, key. How can you reconcile such an ambitious vision with having to work within budgets settled in the hurly burly context of competing interests for limited public funds?
    The key is to acknowledge the simple and self evident truth that the adoption of any person centred ambition, whatever it might be, cannot be guaranteed to be affordable within existing resources. There will be a measure of unmet need. The test of society’s commitment to the vision will be the scale of unmet need.
    The UN approach to the resource challenge is straightforward. It does not expect states to make the resources required for independent living a legal right or in any other way guarantee all the funding required. What it does expect is that states adopt a strategy of progressively realising the resources that are required.
    The Equalities Commission accordingly reflects this approach. It believes the Secretary of State should periodically set out plans for how the resources required will be progressively realised.
    The start point for these plans must be knowing the true scale of unmet need.

    Making the plan a reality
    The first inescapable requirement must be real time information about the scale of unmet need at any point in time. That will require the wholesale transformation of the way needs are assessed, support planned and resources allocated.
    Whilst the law does not require it, policy in England, as in other parts of the UK, prohibits exposure of unmet need.
    An entirely new system of assessing need and allocating resources will be required. Assessments must start from the vision of what each person needs for independent living. Practitioners must identify and cost all such needs for every older and disabled person in need of care and support. Budget holders must control spending not by controlling the local eligibility threshold, but by making decisions about what they can afford. They must learn to secure the greatest degree of independent living for the greatest number of people their budgets allow. IT systems must capture information about needs met and unmet for strategic reporting.

    Political benefits
    Political leaders may not like being put on the spot in the way the Commission’s recommendation might suggest. However, it would be hard to mount an argument against its reasonableness. It does nothing more than expose political leaders to their responsibilities.
    But they can look forward to a silver lining – the banishment of the fear of social care as a bottomless pit of demand. The vision of independent living would create a positive, aspirational context for understanding ‘need’. Research has long shown that support plans built on the best that life can be for the persona and on their strengths, no matter how dire their circumstances, require less public resource than plans built on how bad life is and on their deficits which, it is widely acknowledged, is the hallmark of the current system. The need for, and existence, of stand alone ‘strengths based’ strategies testifies to as much. Swimming against a powerful tide, ‘strength based’ strategies are doomed to fail. The tide must be turned so that ‘need’ is routinely understood in the context of making life as good as it can be for the person. Support plans will be built on the person’s strengths as a matter of routine.

    Scotland
    Interestingly, as Peter Beresford and I previously pointed out, Scotland is ahead on this agenda. It is on the cusp of contemplating such a transformation. Its review of social care has recommended a new paradigm, one that will deliver on human rights with independent living at its core. Whether or not the Scottish government makes the leap is a matter of international as well as domestic interest.

    Conclusion
    This change can be achieved without legislation and instead through moral compulsion and pragmatic good sense. It can happen now. It will not require a single penny more for new services. The only ‘price’ is political courage and integrity.
    At the heart of the change is reversal of the dynamic between needs and resources. A founding principle of the NHS in 1948 was that need must always precede resource. If not always working perfectly, by and large it has survived. We expect clinicians to say what is wrong with us and what modern treatments can do to the best of their knowledge. Waiting times provide a safety valve if need exceeds resources.
    In social care, the reverse was applied. In passing responsibility for the care of older and disabled people from Poor Law Boards to local authorities, when pressed in Parliament on what local authorities would do, Nye Bevan as Minister for Health said they would do ‘as much as resources allow’. No doubt the best answer at the time, the surely unintended consequences were to put social care at the back of the queue for public resources and set it on the path of a resource led definition of need resulting in the tyranny of ‘eligibility criteria’.
    The Commission’s recommendation would require social care to be placed on the same footing as the NHS in how needs and resources are reconciled. It amounts to nothing less than the ‘1948 moment’ increasingly being heard by the likes of Nicola Sturgeon as being what social care requires.

    Colin Slasberg is a social care consultant

    This post makes an important contribution to the debate on the provision of social care in England and is not a reflection of the SHA’s policy.

    2 Comments

    The news that Sir Simon Stevens was standing down from his post as NHS England Chief Executive in July prompted some remarkable tributes from the Health Service Journal (HSJ), even by own standards. The editorial said that Stevens had managed to save the health service on no less than three occasions and has been the most important figure in NHS history since Aneurin Bevan. It also said that Stevens was “the greatest strategic health policy thinker of his generation”, and in this point at least the journal is accurate.

    STRATEGIC THINKING
    Back in May 2004 the Guardian’s John Carvel asked with regard to Stevens: “Why does a bright young man who has probably had more influence on NHS policy over the past seven years than anyone else in Britain decide to quit the public service to work for a $28bn US healthcare corporation intent on aggressive expansion into a new NHS market”? Indeed, Carvel thought that “If he had gone back into NHS management, he could have been running the whole shooting match after two or three more moves”.

    At the time Steven’s move did appear odd as UnitedHealth’s – his new employer and the largest health insurer in the world – anticipated role within the NHS was thought to be marginal at best. It only ran two GP practices in Derbyshire and a case management programme for elderly people. But by 2007 Stevens’ former colleagues had given the green light to 14 companies, including United and other US insurers, to bid for potentially much bigger contracts from primary care trusts providing data analysis and research, giving PCTs a clearer idea of how to manage patients with chronic condition.

    However, as the Guardian pointed out, “their role may be bigger than that. Companies may also be invited in to act as middlemen, negotiating with hospitals on the trusts’ behalf to reduce costs, ushering in the prospect that some patients may find their care plan managed not by a doctor but by an American insurance company”.

    While this programme – the FESC – proved a little premature, it offers much of the key to Stevens’ strategy. Transnational capital was in the early stages of creating a global market in healthcare and adopting standardized organizational formats from which the greatest profit could be extracted. As this process was US-led, it was inevitable that its dominant and most profitable format, that of Managed Care, would be adopted as the guiding template, and Stevens’ move to Minneapolis was in part to familiarize himself more fully with the working of this system and with its leading participants.

    It was also, as became evident, to locate himself as a major player within this wider market creation, and to bring English healthcare into its framework.

    US ‘REFORM’
    The focus of Stevens’ early work in the US was Managed Care’s applicability within public programmes, and in 2007 he became chief executive of Ovations, United’s division providing insurance packages for older patients, and which accounted for over 1/3 of its revenue. It also included Medicare Advantage, the private sector management of the state-funded programme for the over-sixties; a programme which had been heavily criticised for excessive administration costs, its evolution into a multibillion-dollar subsidy for private companies, as well as the insurer’s monopoly within certain states.

    Indeed, the scale of profiteering within Medicare Advantage, and within the US system in general, produced considerable clamour for reform. In 2007, Stevens told the Guardian, “For all its problems, there is often an ability in the States to innovate faster and really test new models of care. This is an exciting time in health reform in the US – there’s a real sense that there will be meaningful change here in the next few years”.

    But this was nonsense. Any sense of global market creation would be fatally undermined if Managed Care was to be replaced by single payer – a national system that would eradicate the need for insurers – on its home ground, and every effort was made to make sure this didn’t happen. Indeed, United, and Stevens himself, played significant roles not only in destroying single payer but ensuring that the position of the giant insurers was strengthened; in large achieved by taking greater control of Medicare, Medicaid and the new market exchanges, to the extent that within a few years these programmes had become the main artery of profits.

    GLOBAL CONCERNS
    With the home territory secured, United, and Stevens, began to apply themselves more fully to global market formation.

    In 2009 Stevens was also charged with managing United’s international operations, growth and M&A in 123 countries, including North America, Europe, and the Middle East. One of his first tasks was helping set up, in 2011, a high-level trade lobby group, the Alliance for Healthcare Competitiveness (AHC), which wanted “the Office of the US Trade Representative, acting through the World Trade Organisation, to force other nations to open up their national health systems to US for-profit insurers, hospitals, professionals, medical device makers, pharmaceutical firms, IT companies and other investor-owned firms”.

    However, it makes little sense to open up national systems unless these conform to standardized templates. A year later, Stevens was helping to pursue this aim, by acting as Project Steward within the World Economic Forum’s (WEF) year-long project on Sustainable Health Systems. Co-organized with the leading US consultancy, McKinsey, workshops held in New York, Berlin, Istanbul, Tianjin, Madrid, Basel, the Hague, and London were, according to the WEF, “remarkable in their consistency of vision”, advocating new care models with delivery from “capital-light settings” using “leveraged talent models” and “low-cost channels, such as home-based models”.

    In ‘Health Incorporated’, undoubtedly the WEF’s scenario of choice, the boundaries of the health industry would be redefined. “Corporations provide new products and services as markets liberalize, governments cut back on public services and a new sense of conditional solidarity emerges”. Further, “Health schemes and insurance markets boom as people seek to cover their health costs. Governments, meanwhile, focus on regulating large integrated health providers in a complex expanding global marketplace”.

    The final part of the jigsaw was applying these structures within the English NHS, and Stevens’ policy formation over the following years – the Five Year Forward View, the New Care Models Programme, the Sustainability and Transformation Partnerships, and, ultimately, the 42 regional-scale Integrated Care Systems – must be seen entirely within this context. With, for example, UnitedHealth “sitting within the ICS in Somerset and acting as the engine room” of transformation, and with Centene playing the same role in Nottingham, such relationships will be pursued in as many ICSs as possible. The bulk of the English policy community is firmly behind this and as yet the process only requires legal ratification.

    CONCLUSION
    This is Stevens’ legacy: that of helping to create a global regime of accumulation, and situating English healthcare within that. In this, and here we must agree with the HSJ, he has proved remarkably successful. Rather than viewing Stevens as unique, however, he should instead be seen as an exemplar of a widespread phenomenon, as throughout his tenure with NHSE, for example, he continued to work with the World Economic Forum on its Executive Board of the Value in Healthcare Coalition, alongside CEO’s from Humana, Kaiser Permanente, Takeda, and several others, to further the aims of transnational capitalism. But in terms of developing and promoting the central tenets of the NHS – those of universality, equity, and indeed ‘freedom from fear’ – he is as far removed from Aneurin Bevan as you can get.

    References

  • https://www.hsj.co.uk/policy-and-regulation/stevens-has-been-the-most-important-figure-in-nhs-history-since-bevan/7029999.article
  • https://www.theguardian.com/society/2004/may/26/nhs2000.health
  • https://www.theguardian.com/politics/2007/nov/11/uk.publicservices
  • The Framework for Procuring External Support for Commissioning. This was set up by Mark Britnell, then the Department of Health’s director general of commissioning and system management, and now short-listed to be Stevens’ successor as NHSE CEO. The policy community clearly
    expects some form of continuity.
  • See for example: https://pnhp.org/news/the-health-insurers-have-already-won/
  • Hellander, I. ‘Health firms’ proposal: Use trade rules to force other nations to import our failed “health ecosystem”’. Physicians For a National Health Program, 4 October 2011.
  • http://www3.weforum.org/docs/WEF_SustainableHealthSystems_Report_2013.pdf
  • http://www3.weforum.org/docs/WEF_Value_in_Healthcare_report_2018.pdf
  • Stewart Player is a political analyst with over 20 years experience of working in the field of healthcare policy. Research areas covered include primary care, ISTCs, US healthcare policy, and long-term strategic developments within the NHS. Most recently working on NHS estates policy, restructuring within the private healthcare sector, and the political theory of transnational class formation.

    2 Comments

    The recent buyout of a chain of London GP practices by the giant US insurer, Centene, prompted considerable media coverage last month with many Labour MPs and campaigning groups claiming the deal represented ‘privatization by stealth’. However, while this description may have been apt in 2005 it is now entirely outmoded as there is nothing covert nor slow about the process anymore. Instead, what is taking place – and has been for many years – is a full-blown, US-led takeover, by the same corporate interests, adopting the same instruments and organizational structures and effected by the deployment of key personnel within public office.

    In fact, primary care services are only a branch-line within Centene’s English ambitions; as in the US its core business will be managing as many of the regional-scale Integrated Care Systems (ICSs) as it can. And, as in the US, making huge profits from the role.

    Anyone doubting the speed and transparency of this takeover need only consider two recent headlines. On the 24th March the Health Service Journal (HSJ) reported that Timothy Ferris, the CEO of a leading US healthcare organization had been hired as NHS England’s new Director of Transformation and even, according to the journals’ editorial, a strong candidate to replace Sir Simon Stevens as head of the NHS in England. While undoubtedly the Director role is extremely important, it was thought that Ferris was unlikely to take such a pay loss unless something even bigger was in the offing. Even more tellingly, it was announced a week later that Boris Johnson’s new health ‘supremo’ was Centene’s UK Chief Executive Officer, Samantha Jones, and that she was entering government as expert adviser for NHS transformation and social care delivery.

    Having its UK CEO within the corridors of Number 10 is the culmination of several years of engagement with the NHS transformation agenda, and Centene’s business model also reveals a great deal about the nature of this agenda and its intended outcome.

    The corporation is unusual in that, unlike its main US competitors, UnitedHealth, Aetna, Anthem and Cigna, its revenues have been built almost entirely from public health programmes. While Centene’s annual accounts highlight its diversified portfolio of, among others, behavioral health management, correctional healthcare services, home-based primary care services, and telehealth, its core business is that of managing services for the poor and disabled, under what is known as Medicaid Managed Care (MMC).

    Collecting money from the state on a per-patient basis, the corporation promises to negotiate with healthcare providers for patient care. As it is allowed to keep any cost difference that may accrue, the incentive is to reduce such care to a minimum. While MMC existed before 2010, it was greatly expanded by the US Affordable Care Act – or Obamacare – in that year, and since then Centene has become the largest Medicaid insurer in the nation. Following its buyout of a major competitor, WellCare, in January 2020, it now commands 21% of this market and is the dominant presence in such key states as California, New York, Florida and Texas. Given the above-mentioned incentive to cut care, the company has inevitably left a trail of scandals, financial penalties and public outcry in almost every state it entered. (See attached examples)

    On the back of its rapidly growing wealth, in 2014, the company sought opportunities overseas, and whilst its first entry point was a 50% share in the Spanish Public Private Partnership company Ribera Salud, this was largely a stepping stone to the English NHS, where Managed Care was being pursued at a systemic level. Centene’s entry to the NHS in fact followed an event in October 2015 co-organized by NHS England’s New Care Model programme, led by Samantha Jones, and the NHS Confederation.

    At least 20 of these New Care Model vanguards – prototypes of the Integrated Care Systems (ICSs) – were introduced to Centene though it is not known how many engaged its services. They did include Nottingham and West Essex, and in the case of the former, the corporation designed the entire ICS over a two-year period beginning in early 2016. This involved an actuarial analysis – necessary for an insurance system – and 32 workstreams including those on patient pathways, population health management, social care integration, IT services, provider payment models, together with governance and contract design.

    Nottingham leaders were happy to boast of their affiliation with Centene and Ribera, saying they were now “standing of the shoulders of giants”. In subsequent events organized by the leading think thanks, the Kings Fund and Nuffield Trust, the corporation was described as a ‘system integrator’ or ‘transformation partner’ but little clarity was offered in terms of its future role.

    However, one presentation revealed far more than the policy community intended – and has since been removed – which described the corporation as an “impartial ICS manager, accountable for all services, data reporting, contracts, and other functions to manage the financial risk effectively”. It would also provide investment via capital and loan guarantees and risk-sharing would be involved. In other words, it would act as a middleman between public funding bodies and provider networks, be able to financially profit from the management of risk, and effectively be a Medicaid Managed Care Organization.

    It is clear that the US Managed Care model lies at the heart of the ICS Programme and of the entire NHS transformation process and is a model which systematically profits from the denial of care to patients, particularly the most vulnerable sections of the population. This is what the headlines should be saying, and this is the role that Centene is primarily seeking to replicate throughout as many ICSs as it can and why with Jones once again at the centre of government such ambitions will be rapidly realized. GP services, while very useful, will be small change in comparison.

    References

    1. https://leftfootforward.org/2021/04/privatisation-by-stealth-dozens-of-mps-slam-private-takeover-of-49-gp-practices/
    2. >https://www.hsj.co.uk/policy-and-regulation/the-leading-candidates-for-the-next-ceo-of-nhs-england/7029994.article
    3. It should also be pointed out that Centene has a large presence in both Medicare Advantage – the over 65’s equivalent of MMC – and in the Obamacare market exchanges.
    4. The list also includes: Arizona, Alaska, Georgia, Illinois, Kentucky, Michigan, and Mississippi.
    5. https://www.latimes.com/business/la-fi-medicaid-insurance-profits-20171101-story.html
    6. https://www.latimes.com/business/la-fi-medicaid-private-insurance-20181018-story.html
    7. https://eu.desmoinesregister.com/story/news/investigations/2018/07/01/iowa-new-private-medicaid-company-troubled-past-centene-millions-dollars-penalties/637740002/
    8. https://claudepeppercenter.fsu.edu/side-posts/dallas-morning-news-pain-and-profit-briefing-by-the-claude-pepper-center/
    9. Nottingham City Clinical Commissioning Group, ‘NHS Clinical Commissioners. Core Cities’, 6 December 2016.

    Stewart Player is a political analyst with over 20 years experience of working in the field of healthcare policy. Research areas covered include primary care, ISTCs, US healthcare policy, and long-term strategic developments within the NHS. Most recently working on NHS estates policy, restructuring within the private healthcare sector, and the political theory of transnational class formation.

    6 Comments

    A recent study by the Bevan Foundation has called for the establishment of a “ Welsh Benefits System”. It found that over £400 million in welfare type payments are distributed by devolved bodies but that the system  lacks coherence and does not operate in a strategically focused way.

    Just over half of all public expenditure in Wales is undertaken by devolved bodies e.g. Welsh Government, NHS, housing, and local government. The bulk of the remainder is through welfare payments which constitute over one third of all Welsh public expenditure. While the overwhelming bulk of these these payments are administered and delivered by the Westminster government a relatively small element is delivered by via devolved Welsh public bodies. However in terms of Welsh social protection payments, the sum is not insignificant and it operates to complement the main welfare benefit system.

    These payments cover twelve different schemes which were included in the study. They include Council Tax Reduction Scheme, Free School Meals, Disabled Facilities Grants, Education Maintenance Allowance and Discretionary Assistance Fund. They all operate under their own rules with varying eligible criteria and administered through a range of separate organisations who have their own way doing business.

    In view of this the Bevan Foundation calls on the Welsh Government to review all of these payments with purpose of establishing a new “Welsh Benefits System” which would have a clearer strategic focus, be less complex, easier to access and be more consistent in its operation across Wales.

    It sets out five principles on how the system should operate:-
    • It should focus on households on low incomes, defined as being eligible for Universal Credit, and use the same criterion across all schemes.
    • It should provide cash or in-kind help that is sufficient to make a real difference to household incomes
    • It has a single point of access for several benefits, using online, phone or postal methods.
    • It is based on eligibility for and an entitlement to assistance, not discretion.
    • Applicants are treated with dignity and respect.

    At a time when we are facing into a period of increased unemployment and financial hardship these proposals need serious consideration. In addition they provide an important stimulus to a wider debate on whether other social protection payments should be devolved to allow the Welsh Government and other devolved bodies to develop a more coherent anti-poverty strategy in Wales.


    https://www.bevanfoundation.org/publications/a-welsh-benefits-system/


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