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    Summary

    The current National Health and Care System has shown the fact that a system can run on the basis of an ethic of altruism and public service, not profit.

    The hospitals have always held primacy in our system, and reorganisations have tried to rebalance the system in favour of community health and primary care.

    Public Health has been weakened by the 2012 Act and enjoyed more prominence during the period of Primary Care Trusts when it was integrated with Primary Care. This situation needs to be restored

    Health and Care need to be integrated regionally and the paper argues for Combined Authorities to be given overall control.

     

    No, the title was not a typo. There is more to healthcare than the NHS which we all know and love. Health Care includes Public Health, Social Care, Pharmacy and Dentistry, and they all need to work together. The present crisis has shown this. This is something which many experts in the field have acknowledged for years; doing something about it has proved elusive and difficult. This present crisis has shown not only the heroic dedication and commitment of the staff, but also the gaps and problems which need to be rectified, so perhaps this is the time to try and do it.

    In this paper I have tried to set out some sort of roadmap of the problems we need to tackle. That is why I have called the objective a National Health System, rather than the current NHS, but have preserved the iconic brand which is known all over the world. I once met mountaineers in a foreign land who praised the NHS.

    I am not an academic. I have taught about how the Health System works, but more practically I have been a councillor, worked for the NHS, served on a Clinical Commissioning Group and now Health Education England. I wrote a book about how the NHS should be organised with Sunderland University, and I will draw on bits of that in this paper, but my knowledge comes mainly from my practical experience. (“What Sort of NHS do We Want?”, Searching Finance, 2012)

    How we arrived at the present position

    There is much ignorance amongst the public as to how the NHS actually works. It is certainly very fragmented, but still able to respond as a national system, which has been shown by the present crisis. Many fondly think there was a “golden age” back in the 1950’s when the NHS was first established.  Aneurin Bevan boasted of a national system where the “sound of a bedpan dropped in Tredegar would reverberate around the Palace of Westminster”.

    We all know establishing the NHS was a political struggle and what emerged was a messy compromise. The immediate problem was sorting out hospitals which needed investment after the war. I can remember seeing pictures of my Grandmother, who was a hospital almoner, lining up the nurses to go out with the collection tins. Hospitals seem to have dominated ever since although they deal with a minority of the people who use the system. There are more patient contacts with GPs, carers, Public Health programmes ,  and Social Workers. Local Government had played an important role in health before 1948, and Directors of Public Health were important people. Much of what we would now call primary care was still run by local authorities up until the major reorganisation of 1974.  Strong central control was the way things worked in 1948, a legacy of the war – the NCB, British Railways, The National Grid and even the New Towns. The new NHS was no different.

    Initially Governments thought that a strong NHS would improve health and once the backlog of bad health had been dealt with, costs would reduce. This of course did not happen, so managing the NHS became a constant struggle between improving the service and keeping a lid on costs. In 1974 all health services came under Regional Health Authorities and this remained until the next major reorganisations at the end of Thatcher’s period in power. This was when the concept of the “market” was introduced into the NHS.

    At that time the model of the big top-down organisation was being challenged both in the public and private sphere. Although big organisations were still centrally controlled from the top, they wanted more flexibility locally to restructure and adapt to changing conditions at the bottom. Even the army now operates like this. The idea was that those who planned a service would commission it from who could provide it best. Commissioning meant what the service was going to be had to be evaluated and planned. The NHS had to think exactly want it wanted and the best, and most cost-effective way, of achieving it. This does not necessarily mean using the private sector. Other NHS and not for profit organisations are often involved. But it was never a free-for-all. The NHS was still in charge. Resulting from the Thatcher reforms there was a privatisation of many ancillary services such as cleaning, maintenance and catering. For clinical services there was still a preference to commission NHS and not for profit organisations. One consequence of these changes was that local authorities outsourced much of their social care provision, mainly for economic reasons.

    The Labour Governments after 1997 modified the model, introducing both Foundation Hospitals and Primary Care Trusts. In my opinion the PCTs were a very progressive reform, and one for which the Blair Governments, Frank Dobson and Alan Milburn received very little credit. They brought together Public and Community Health and allowed a high degree of local government involvement since they covered the same areas as local authorities and usually had councillors on their boards. Under the Blair Government resources were diverted to PCTS, and also prioritised deprived areas such as Easington in County Durham. There was a real push to reduce health inequalities. In my experience the PCTs also put a considerable amount of resource and effort into engaging with the public. In some ways this was a “golden age” for engagement, compared to the much less robust arrangements which replaced them.

    The Black Report in 1979 pointed out that despite large investment in the NHS, health inequalities persisted.  Professor Townsend, one of the main authors, mentioned Easington in a later report and visited Peterlee to explain his ideas. The dominance of the Hospitals in the system had led to a neglect of both social care and the promotion of health in the community. To reduce inequalities meant placing far more emphasis on how people lived, the conditions in which they lived and looking after them in the community when they were frail or unwell. Successive reports re-emphasised what the Black Report had said.

    The Primary Care Trusts were an attempt to redress the power balance with the hospitals. More resources were given to community and public health, which were now integrated. GPs had a major role. The PCTs were coterminous (horrible NHS word) with local authorities, and the Director of Public Health was now appointed jointly between the local authority and the PCT.  Cooperation was much easier. Many PCTs had councillors on their boards. The PCTs now had more power to negotiate with the hospitals to get better deals, and work with them. At this stage commissioning was mainly for other public sector and voluntary organisations. The NHS was the “preferred provider”.  The PCTs made considerable progress in improving public health, such as the reduction of smoking and teenage pregnancies, and set up many community initiatives.

    In my opinion the PCTs were a very progressive reform, and one for which the Blair Governments, Frank Dobson and Alan Milburn received very little credit. They brought together Public and Community Health and allowed a high degree of local government involvement since they covered the same areas as local authorities and usually had councillors on their boards. Under the Blair Government resources were diverted to PCTs, and deprived areas were prioritised. There was a real push to reduce health inequalities. In my experience the PCTs also put a considerable amount of resource and effort into engaging with the public. In some ways this was a “golden age” for engagement, compared to the much less robust arrangements which replaced them.

    I think I should make a few remarks about commissioning.  Many on the left regard it as synonymous with privatisation. This simply is not so.  As explained above the NHS is not monolithic and contains many different sections and specialities. Some of commissioning is straightforward – estimating the number of routine, predictable operations required in a year, like hip replacements. Then it is about negotiating the best deal with a provider.  But some is more complex, such as public and community health which requires constructing alliances between different organisations. Using a private provider is not a necessary part of this at all.

    All this was changed by the infamous Social Care Act of 2012 which established the Clinical Commissioning Groups. It compelled contracts to be put out for public tender, so private providers could apply, and often threatened to sue if they thought they had not been fairly considered.

    Councillors were not allowed to be involved, and their only oversight was through Scrutiny Committees. Public Health was handed back to local authorities. A strong national agency, Public Health England was created to exercise many of the responsibilities which PCTs had previously done including disaster planning and campaigns to reduce smoking and other habits deemed to be harmful to health. I will say more about the consequences of that later.

    The CCGs were a result of lobbying by a minority of GPs who wanted to commission directly without the NHS bureaucracy and pressure from private providers who wanted a bigger slice of the action. The Government thought they could use them to reduce costs. The whole enterprise was ill thought out and very disruptive. It is a useful lesson in the sort of “creative destruction” advocated by the likes of Dominic Cummings. The idea being that somehow once the bureaucratic shackles of the NHS and local government had been thrown off, GPs would somehow emerge as the heroes of the NHS and challenge the dominance of the Trusts. I can remember attending seminars before the new act was implemented where it was even advocated that two GPs could form a commissioning group. How they would work out the necessary plans and calculations was not thought about. I can remember a seminar about the changes entitled “Breaking Though”.

    In reality it was only a minority of GPs who wanted to run the NHS.  Most of them simply wanted to get on with their jobs which were demanding enough. Much of the pressure came from private providers, aided and abetted by members of the government anxious to reduce costs and eliminate, as they saw it, unnecessary bureaucracy.  Andrew Lansley, in many other ways a fairly level-headed man, seemed carried away by it all, and David Cameron and Nick Clegg did not really understand it. The only contribution by the Liberals was to ensure lay representation on the new CCGs. The reorganisation was described by one critic as “visible from space” and disrupted the NHS for several years.  Patterns of cooperation between agencies, carefully established over time were either disrupted or had to be carried on “under the radar” in the new competitive model. A new bureaucracy had to be established from the PCT staff to perform commissioning.

    One hospital (Hinchinbrooke) was taken over by a private company which could not cope and had to hand it back to the NHS.  Many private providers attempted to run the new 111 services, but now most of them are organised by Ambulance Trusts.

    The idea behind the 2012 Act was that there would be a free market. The CCGs would commission the most efficient service, public or private.  Collaboration, whether between hospitals and other parts of the NHS was not, in theory, allowed. Private providers could take the NHS to court if they thought the NHS had an unfair advantage. In practice, however, the national NHS kept a firm grip on things. There is always the need in the NHS to pool risk.  If there is an outbreak or crisis in one area the whole system has to pitch in.

    The 2012 Act led to an extremely costly and disruptive reorganisation. Many health professionals soon realised that it did not work. In reality the bureaucracy expanded, and much energy had to be expended negotiating between different parts of the NHS. The majority view was that if the NHS was going to cope, two things were necessary. Firstly, more resources needed to be directed to promoting good health, and thus reducing those diseases which were caused, or exacerbated, by a bad lifestyle, such as diabetes. Secondly an ageing population meant more people would need care in the community, rather than treatment in hospital. If they did not receive this care, then they would end up in hospital, as so called “bed blockers”.  Hopefully if policies to address these objectives could be put into place it would reduce unnecessary hospital admissions.

    Local health professionals have tried to negotiate arrangements for CCGs, Hospitals and Local Authorities to work together.  These were originally called Strategic Transformation Partnerships, abut have now morphed into Integrated Care Systems.

    Simon Stevens, Chief Executive of the NHS, said in the Five Year Forward View

    “The government will not impose how the NHS and local government deliver this. The ways local areas integrate will be different, and some parts of the country are already demonstrating different approaches, which reflect models the government supports, including: Accountable Care Organisations such as the one being formed in Northumberland, to create a single partnership responsible for meeting all health and social care needs; devolution deals with places such as Greater Manchester which is joining up health and social care across a large urban area; and Lead Commissioners such as the NHS in North East Lincolnshire which is spending all health and social care funding under a single local plan.”(Implementing the five Year Forward View 2017)

    More detailed plans for ICSs have been set out last year

    The NHS Long-Term Plan set the ambition that every part of the country should be an integrated care system by 2021. It encourages all organisations in each health and care system to join forces, so they are better able to improve the health of their populations and offer well-coordinated efficient services to those who need them.(The NHS, Designing Integrated Care Systems in England 2019)

    It is important to notice the word “Systems”. These ideas rely on different organisations working together. They do not pool budgets, and have no one accountable management, just committees who liaise.

    The trouble is all this is against the 2012 Act. Manchester eventually commissioned other NHS organisations to deliver its community health services, but was threatened with court cases from private providers. All that would have wasted a considerable amount of public money.

    The Conservative election manifesto recognised the system was not working in 2017 and proposed changes to the rules.  All this has since been forgotten about with the dominance of Brexit but will eventually have to be addressed.

    Some on the left see the ICS’ as some sort of conspiracy, implying that there is a secret plan to fragment the NHS and then sell off parts of it. Simon Stevens is often portrayed as being some sort of ogre who is using his American experience to somehow smuggle American health companies into this country.  Remember that health is largely organised on state lines in America, and the insurers who pay for much of it want single organisations whom they can work with. I think the reality is somewhat different. Many think Simon Stevens is a shrewd operator who managed to secure additional funding for the NHS.

    Ever since I have been involved with the NHS there have been efforts to join up health and social care at a community level, and to challenge the dominance of the hospital Trusts.  In the early 2000’s the former Sedgefield Borough Council worked with their Primary Care Trust and Durham County Council to effectively integrate services by putting social workers, district nurses and housing officers in the same room, and Easington PCT considered integrated care initiatives.  The Sedgefield initiative worked at a grassroots level because it did not involve redesigning systems.  As soon as you tried to set up a new structure people retreated into their bunkers.

    It is much easier to set up an integrated system in theory than in practice. One senior insider I spoke to recently said that negotiations to set up an integrated care system locally were not getting very far because of vested interests. Different organisations have different hierarchies and systems of accountability.  They are also keen to hang onto their budgets.  It looks like a solution will only be reached if the NHS imposes it, and they do not have much spare energy for that at the moment.

    I remember the days before local government was reorganised in Northumberland and Durham, and District and County Councils were merged into the present unitary ones. The Government asked councils to work out ways of working together. There were interminable liaison meetings between the different councils which got precisely nowhere, each one wanting to preserve its own interests. Eventually the Government imposed a solution.

    Insiders also tell me there is very little interest from councils in the new arrangements.  Although in practice working relationships between the local authority and the NHS in most areas are good, some councillors appear to prefer the scrutiny role than actually being responsible for the service.

    So overall I think the problem is not so much a conspiracy to carve up the NHS as some on the left seem to think, but rather getting our fragmented system to work together for the benefit of all of us.

     

    Where we are now

    Most people on the left believe in a publicly run health service, free at the point of use. They also value the dedication of the staff and think they should be better rewarded.

    Socialists also dislike privatisation.  There is a difference between having to use the private sector if nothing else is available and the obligation to put services out to tender regardless of whether they are functioning properly as happens now. Efforts to integrate services are also hampered if parts are privately owned, as private providers may not disclose their information and not cooperate. (I remember my efforts on the CCG to get Capita to produce its accounts to the Audit Committee for a service they provided.)

    Privatisation often results in poor staff conditions and pay.  I think nearly all Labour Party members would wish a future Labour Government to repeal the 2012 act and restore the NHS as the preferred provider.

    That is the easy part.  Now we get to the difficult issues of how we organise an integrated service in the future and ensure it is accountable. Let me stress now that I do not want another major reorganisation. Our NHS staff do not deserve that. Rather we must think about how what we have now can be made to work better.

    I have not said much about Social Care, either personal, which is delivered at home, or residential in care homes. It is widely accepted that the situation is at crisis point. The paper by Professor Paul Corrigan is an excellent starting point. A recent briefing by the Nuffield Trust emphasised the dimensions of it. (Nuffield Trust, Election Briefing Nov 2019.)  Here are a few statistics:

    We believe the scale of the workforce challenge has so far been underestimated: our new calculations show that just providing a basic package of care of one hour per day to older people with high needs would require approximately 50,000 additional home care workers now. To provide up to two hours would need around 90,000 extra workers. ( Then there is the question of where they would come from if Brexit is implemented)

     

    A decade of austerity has seen government funding for local authorities halve in real terms between 2010–11 and 2017–18,* which has led to councils tightening the eligibility criteria for care. It is known that there were 20,000 fewer older people receiving long-term social care services in 2017/18 than in 2015/16, but this is likely to understate the problem – estimates of unmet need go as high as 1.5 million.

    Constraints on public sector finances in recent years have meant that fees paid by councils to the organisations that provide home and residential care have been cut repeatedly. The predominant approach used for buying services from providers incentivises organisations to provide a bare minimum of services and nothing more. Some 75% of councils report that these organisations have either closed or handed back contracts in the last 6 months, creating enormous disruption and discontinuity for those receiving care.

    The problems of Care Homes have been highlighted by the current pandemic. There are roughly 11,300 care homes in the UK who look after 410,000 residents. Most of their income comes from fees paid by residents or their families, with a minority provided by local authorities.  In practice the private fees subsidise the public ones which are often insufficient to cover the costs of the residents. Sally Copley of the Alzheimers Society says “The whole system hasn’t been working properly for some time”.  Many staff are on zero hours contracts and staff shortages are endemic as Professor Corrigan pointed out. Staff are paid far less than they are worth and do not receive adequate training nor professional recognition.

    We all have formative experiences which make us socialists. One of mine was in a care home where a member of my family was a resident. I knew two married members of staff well. Both were dedicated to their work and the residents.  They were always cheerful.  I can remember them saying with great enthusiasm how they had saved up enough to take their young family to Great Yarmouth for a week in the summer.  Their work deserved far more reward than that. I though “something has to be done about this”.

    A proper care system would assess people on the basis of clinical need, not ability to pay.  At the moment there is continuing health care, provided by the NHS, which is free,  for those thought to have health issues, but domiciliary and residential care largely has to be paid for by the clients or their families except for the minority who benefit from a stringent means test. Dementia is not classified as a medical condition.  Many people feel this system is unfair. A senior commissioner I spoke to said she would rather commission “care” which would be provided by professionals trained by the NHS, rather than try and distinguish between continuing health care and social care.

    At the last election the Labour Party promised free personal care for those over 65, as in Scotland.  As the Nuffield Report points out this does not include assistance with cleaning and general supervision.

    One of the best assessments of the cost of integrating health and social care was done by Kate Barker and associates for the Kings Fund in 2014.  They looked carefully at what social care involves, and how it could be paid for. There are different levels of social care, and they conclude that the same principles should apply as to the NHS.  Afflictions can strike anyone, rich or poor, so care funding should come from the public purse. The costs of care and treatment should be publicly funded, although this might not include the actual “hotel charges” for residential care. The authors suggest various ways to raise the extra funding, such as means testing free TV licences, and requiring those (usually better off) who continue to work after the retirement age to pay national insurance.  There would of course be a need for those on higher incomes to pay more tax, possibly after the age of 40, and the Government should consider a wealth tax which in reality for most would be a tax on your home. There are various avoidance schemes and tax loopholes for the wealthy which could be closed.

    There would probably be agreement amongst socialists that health and social care should be integrated and paid for out of taxation, but it is no good thinking only the rich would have to pay.  Everyone would have to pay something.

    Finally, there is the issue of Public Health. Transferring it to local government has not been a success. The budget, supposedly ring fenced, has been diverted to other local government departments because of the squeeze on local authority finance, and last year some of the poorest authorities took a very big hit. Durham lost almost 40% of its public health funding. Yet even in its diminished state, The Centre for Health Economics at York has estimated that expenditure on Public Health is four times more effective in promoting health than that spent on the NHS. Simple common sense tells us that keeping people healthy is better than curing them once they are ill.

    Several distinguished epidemiologists, including Professor Allyson Pollock at Newcastle, have argued that the marginalisation of Public Health locally has severely reduced the country’s ability to deal with the coronavirus epidemic. Back in PCT days Public Health had the resources and plans to deal with disasters, often pooling risk with others.  Now that has been transferred to Public Health England, leaving local authority public health departments to deal mainly with schemes to keep people fit. Worthy enough, but nothing like the resources they used to have.   A regional public health response might have led to better testing and efforts to contain the virus. The Government’s response has been “one size fits all”. Restoration of the importance of Public Health and its reintegration with the NHS should be a major aim of policy.

     

    Policy Objectives

    Our policy objectives will be ambitious. We might need a five year, or even ten year forward view to coin a phrase.

    We seek an integrated National Health System, encompassing the National Health Service, Social Care, Public Health, with links to Pharmacy, which has a role in primary care, and Dentistry, which is not a totally public service although the NHS controls the training. But we do not want a major reorganisation again. Our dedicated health and care staff do not deserve that. What we want to do is give the present system more resources and steer it in the right direction. Repealing the 2012 Act would be a priority.

    We must ensure that particularly in social care staff are paid a decent wage and given proper access to training. The present system which relies on the minimum wage and zero-hour contracts must end.

    The first thing we know is that all this will cost more than it does now, although integration may produce some savings. A future Labour Government has to be honest about this. It is no good promising a few rich people will pay, as the public simply will not believe it. It is a good principle that everyone should contribute to something which is part of national solidarity, so all feel that it is theirs, but contributions have to be proportionate to the ability to pay.  A proper revaluation of properties, which is akin to a wealth tax, would raise money through the community charge to make a substantial contribution to social care.  An increase in National Insurance, earmarked for the NHS should be considered, provided that it became more progressive.

    Then we come to the whole issue of Governance.  Despite showing little enthusiasm, local government needs to be involved in the whole strategic planning of the NHS. But they must not see it as simply concerning their own territory, so to speak. The present structure of Foundation Trusts should stay, but Public Health and Commissioning Services should be reintegrated into Primary Care Trusts, in my opinion one of the most successful NHS organisations in its long history of restructuring. The PCTs would have oversight of Pharmacy and Dentistry. Many of the responsibilities transferred to Public Health England should be restored to the PCTs. Their boards should contain both professional and local government representation.

    There is a need for a regional dimension in all this.  When the Northumbria Trust reorganised its A&E provision to build a super emergency only hospital at Cramlington it did not consider the effect on major hospitals in Newcastle like the RVI. Patients in Hexham, for example would find it easier to go there than to Cramlington. This is just one example of where a regional perspective would have been useful.

    Local authorities’ power over social care providers need to be strengthened. At present there is a real mixture of providers, commercial companies, charities, cooperatives and individuals who provide personal care as a small business. There is a strong argument for integrating the private sector, which is virtually bankrupt anyway, into area trusts responsible to local authorities. Standards and remuneration need to be strengthened.

    Trying to merge different organisations would be very difficult and disruptive. The result could be some unwieldy bureaucracy which would be difficult to manage and slow to react to changing needs and priorities. Accountability should be pushed upwards. We need to have some sort of accountable umbrella which ensures that hospital trusts, PCTs (coterminous with local authorities) and Social Care, which is regulated by local authorities, all work together. There will always be oversight from NHS England, NHS Improvement, and the Care Quality Commission, but these bodies are mainly regulatory.  There needs to be a more local system of Governance and Oversight.

    Nationally the country is moving to a system of Combined Authorities which at present oversee economic development and transport.  Manchester has also had community health added to its powers. A combined authority does not take powers away from local authorities.It has power and oversight over services provided by other organisations. Its membership is delegated from existing councils, with a mayor if that is agreed. It would seem logical for a combined authority to exercise oversight over the Foundation Trusts, PCTs and Local Authority Care in its area and produce a plan to ensure they work together. The CCGs now cooperate to cover larger areas in any case. That way we preserve flexibility within the system without adding another layer of bureaucracy,and move towards the integrated National Health System we want.

    I want to end by stating that as socialists we owe a great deal to the NHS and Care Services. They are an example, much admired elsewhere, of how a publicly run system can be successful, and that duty and altruism more important motivators of human conduct as making a profit.  It is our duty to ensure it is funded and run properly.

    David Taylor-Gooby, author on the NHS and member of the Socialist Health Association

    May 2020
    1 Comment

                      DOCTORS IN UNITE

    The rising death rate from COVID-19 and the pressure of the pandemic on a weakened NHS have caused warranted anxiety. There were reports from Italy of rationing, when life saving equipment was simply unavailable for some sick patients, and difficult triage decisions had to be made by doctors. Many deaths in the UK are occurring among elderly residents of care homes, and unlike deaths in hospital, these have not been given prominence in daily reports.

    Press coverage has indicated that Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) agreements have been misused. Rather than an agreement on a one to one basis after full discussion and as part of advance care planning, marginalised groups such as the elderly and disabled have been asked for consent by letter. In some cases decisions have been made on their behalf.

    Such agreements should only apply to what happens in the event of the heart stopping during an illness, but they have been wrongly interpreted as consent to not having treatment for illness, or not being admitted to hospital.

    Professional bodies such as the British Medical Association are attempting to provide an ethical framework for health care staff faced with impossible decisions regarding rationing and who should take precedence. Not only has the government failed to provide guidance on this matter, perhaps because it undermines their narrative that the NHS is coping with the onslaught and will continue to do so. Their grotesque incompetence in failing to follow World Health Organisation advice has put front line workers in an unprecedented position: having to make decisions about who should and who should not receive care.

    The government, policymakers, managers and clinicians have a responsibility to patients. They must ensure that any system used to assess the escalation or de-escalation of care does not disadvantage any one group disproportionately. Treatment should be considered irrespective of a person’s background when it can help them survive, balanced against the risk of that treatment causing harm.

    A GP surgery in Wales sent letters to patients asking them to complete a DNACPR form, reportedly stating “several benefits” to its completion. The form explained that “your GP and more importantly your friends and family will know not to call 999” and that “scarce ambulance resources can be targeted to the young and fit who have a greater chance.”

    In an “ideal situation”, it continued, doctors would have had this conversation in person with vulnerable patients, but had written instead due to fears the doctors may be asymptomatic carriers of coronavirus. The practice later apologised to recipients of the letter.

    A GP surgery in Somerset also wrote letters to a support group for adults with autism, requesting they make plans to prevent their clients being resuscitated if they become critically ill. The letter was later withdrawn after criticism.

    The Guardian has reported that “elderly care home residents have been categorised ‘en masse’ as not requiring resuscitation”, and that “people in care homes in Hove, East Sussex and south Wales are among those who have had ‘do not attempt resuscitation’ notices applied to their care plans during the coronavirus outbreak without proper consultation with them or their families”.

    The Mirror also reported that adult patients and parents of children with chronic conditions were sent letters asking if they wanted to have DNACPR statements agreed in case of admission to hospital with coronavirus.

    A learning disability care provider described an unprecedented increase in the number of DNACPR letters it had received. In the Health Service Journal their spokesperson said “making an advance decision not to administer CPR if a person’s heart stops, solely because they have a learning disability, is not only illegal, it is an outrage.

    “We are seeing DNR orders that have not been discussed with the person themselves, the staff who support and care for them, or their families. This is very concerning as it may potentially lead to people being denied life-saving treatment that other patients would be granted”.

    NHS Trusts, GPs and clinical commissioning groups have been told by NHS England they must not send out blanket DNACPR forms.

    The British Medical Association, Royal College of Nursing and Resuscitation Council UK provide detailed guidance on decisions relating to cardiopulmonary resuscitation. CPR was introduced in the 1960s following recognition that some hearts could be restarted when they had stopped beating, often after a heart attack.

    The probability of CPR being successful in other situations is generally low. It involves compressing the chest, delivering high voltage electric shocks to the heart, attempts to ventilate the lungs and giving intravenous drugs. Injury to ribs and internal organs may occur and some patients survive only to spend long periods in intensive care without full recovery. This is why people talk about the risks and benefits of CPR.

    The heart and lungs stopping is a natural part of dying from any cause. When CPR is used in people who have been gravely ill it is very unlikely to work. Rather than a peaceful death, their lives could end in the context of aggressive but futile attempts to change an irreversible process.

    To prevent this happening patients can be asked well in advance about their wishes, with a full exploration of the issues involved. In normal circumstances, the decision to not attempt CPR is made after a discussion between patient and doctor. An understanding can be reached that because of frailty, and because the heart stopping is the final stage of an irreversible process of multiple organ failure, the potential benefits to the patients are outweighed by the risks of pain and indignity.

    Standardised DNACPR forms were introduced to attempt to ensure patients’ wishes were recorded and would be easily available to healthcare staff. They do not have to be signed by patients. The member of the healthcare team who has discussed CPR with the patient signs the form, as does the responsible senior clinician (this may well be the same person).

    Doctors are told by their professional organisations that “considering explicitly, and whenever possible making specific anticipatory decisions about, whether or not to attempt CPR is an important part of good-quality care for any person who is approaching the end of life and/or is at risk of cardiorespiratory arrest.

    “If cardiorespiratory arrest is not predicted or reasonably foreseeable in the current circumstances or treatment episode, it is not necessary to initiate discussion about CPR with patients.

    “For many people, anticipatory decisions about CPR are best made in the wider context of advance care planning, before a crisis necessitates a hurried decision in an emergency setting.”

    The purpose of advance care planning is to allow each individual to choose in advance what interventions, including CPR, they wish to receive in the event of deterioration in their health. For people with multiple conditions, or those who are severely unwell, the optimal time to undertake advance care planning is when they are relatively stable. Discussions are best had in their home or usual care environment where planning can be supported by the healthcare professionals who know them well. These may include doctors and nurses based in general practice, in the community, in hospices or in hospitals. Making a decision in advance ensures that there is time for all the appropriate people to be involved in a decision. It allows time for reflection and scrutiny.

    Decisions made may be written down, and described variously as a living will, personal directive, advance directive, medical directive, or advance decision. This is a legally enforceable document in which a person specifies what treatments or interventions they would not wish to undertake in the future if they are unable, due to illness, to give their opinion at that time.

    Nearly one in five people over 80 may need hospitalisation with COVID-19. An estimated 1.28% of people diagnosed with COVID-19 will die. Around half of patients ill enough to be admitted to ICU in the UK for ventilation have died. 95% of UK COVID-19 deaths have occurred in patients with underlying medical conditions.

    Consequently asking people most at risk to decide what they would like to happen in the event of them becoming unwell is sensible, and good medical practice.

    It is however important to distinguish this from a blanket application of DNACPR orders to particular groups. This is discriminatory and illegal. There must be full consultation with the individual concerned. A thorough face-to-face discussion with staff who know the patient well is required. This has clearly not happened in the examples cited in the press.

    Care workers may worry about breaking social isolation rules and potentially infecting patients at home visits. There are ways around this, including video consultations. Poor communication over such sensitive issues breeds mistrust.

    The risks and benefits of CPR may change in the context of coronavirus. In patients with COVID-19 pneumonia who then have a cardiac arrest, not only is there little likelihood of CPR restarting the heart, there is the potential for health personnel to become infected as a consequence of attempted resuscitation.

    Professional guidelines are however quite clear. “A decision not to attempt CPR applies only to CPR. All other appropriate treatment and care for that person should continue. It is important that this is widely understood by healthcare professionals and that it is made clear to patients and those close to them.

    This is essential as it is a common fear amongst members of the public that a ‘DNACPR’ decision will lead to withholding of other elements of treatment.”

    For example, if someone in a care home agrees to a DNACPR, it does not mean they cannot be admitted to hospital if appropriate, or that they cannot be considered for intensive care. It only means that if their heart stops, resuscitation would not be attempted.

    There is an anxiety about the availability of resources if the number of patients overwhelms the amount of life saving equipment available. The COVID-19 pandemic is a major challenge for a weakened NHS. The elderly, care home residents and those with disabilities are being marginalised. The government mantra of “stay at home, protect the NHS, save lives” led people with acute medical conditions to avoid medical attention when they needed it, and encouraged some ill with COVID-19 to stay out of hospital, dying at home when they may have survived.

    The idea of rationing life saving care is anathema to healthcare staff, but it may be on the horizon. In Italy, which has twice as many ventilators per 100,000 population as the UK, there were age cut-offs applied for admission to intensive care. Ventilator treatment was withdrawn from some patients expected to do badly in favour of younger patients with a better prognosis.

    If rationing does become a reality, front line teams will try and work in accordance with accepted ethical principles. This will unfortunately not provide perfect answers.

    Ethicist and barrister Daniel Sokol described the dilemma on April 7th. “It is no secret that intensive care unit (ICU) capacity may be overwhelmed if the pandemic worsens. Why then is there so little published guidance on ICU triage from the UK government and NHS Trusts? The Royal College of Physicians’ ethical guidance on covid-19, published on 2nd April 2020, stated that ‘any guidance should be accountable, inclusive, transparent, reasonable and responsive.’ The British Medical Association’s ethical guidance, published the next day, emphasised the need for decisions to be made ‘openly, transparently, by appropriate bodies and with full public participation’.”

    Sokol asked, “Where are the protocols setting out the triage criteria?” He suggested that senior officials in the government and NHS England may be reluctant to publish anything that might clash with the current messaging that the NHS is managing present demand and is likely to continue to cope. “The official message is that with continued communal efforts the NHS can be protected, ICU need not be overwhelmed, and tragic choices will be avoided. Publishing a document that contemplates an NHS in chaos and tragic choices aplenty sits awkwardly with that message”.

    He also wondered if fear of legal challenge was a factor. The National Institute for Health and Care Excellence was threatened with judicial review on publishing its COVID-19 guideline for clinical care. This advice was subsequently amended due to concerns about unlawful discrimination against people with long-term conditions including autism and learning disabilities.

    The 2019 National Security Risk Assessment also highlighted the potential for public outrage if health and care systems were seen to struggle, especially if provision of the remaining services was unevenly distributed.

    There are no ethical guidelines from the Department of Health or NHS England for front line staff and senior managers relating specifically to COVID-19, but the British Medical Association (BMA), Royal Colleges and specialist medical bodies have produced their own.

    The BMA suggests, “All patients should be given compassionate and dedicated medical care including symptom management and, where patients are dying, the best available end-of-life care. Nevertheless, it is legal and ethical to prioritise treatment among patients. This applies where there are more patients with needs than available resources can meet.”

    To help decide which patients to treat, they ask doctors to “follow your organisation’s guidelines and protocols, including relevant procedures for making complex ethical decisions. The speed of patient’s anticipated benefit will be critical. Other relevant factors include: severity of acute illness; presence and severity of co-morbidity; frailty or, where clinically relevant, age.

    “Managers and senior clinicians will set thresholds for admission to intensive care or the use of highly limited treatments such as mechanical ventilation or extracorporeal membrane oxygenation based on the above factors. Patients whose probability of dying, or requiring prolonged intensive support, exceeds this set threshold would not be considered for intensive treatment. They should still receive other forms of medical care. Prioritisation decisions must be based on the best available clinical evidence, including clinical triage advice from clinical bodies. These criteria must be applied to all presenting patients, not only those with COVID-19.”

    The Royal College of Physicians says, “Any decisions made to begin, withdraw or withhold care must also comply with the shared decision-making policies of the NHS. This means that these decisions should include the patient and their wishes (as much as is feasible for the given situation) and, if appropriate, the patient’s carers. This is true regardless of whether the patient has COVID-19.

    “Front-line staff, policymakers, management and government have a responsibility to patients to ensure that any system used to assess patients for escalation or de-escalation of care does not disadvantage any one group disproportionately. Treatment should be provided, irrespective of the individual’s background (e.g. disability) where it is considered that it will help the patient survive and not harm their long-term health and wellbeing.

    “Many front-line staff will already be caring for patients for whom any escalation of care, regardless of the current pandemic, would be inappropriate, and must be properly managed. We strongly encourage that all front-line staff have discussions with those relevant patients for whom an advance care plan is appropriate, so as to be clear in advance the wishes of their patients should their condition deteriorate during the pandemic.”

    There is an urgent need for national guidance from the Department of Health and NHS England on how to manage if resources run out. In the absence of such guidance, individual clinicians will be using the available evidence to assist in making extremely challenging decisions.

    This will not be an easy task, as illustrated by one Italian doctor speaking to the New York Times. “If you admit an 82-year-old with hypertension, in a situation where you have two or three patients waiting outside your I.C.U. who have many more chances of survival that you cannot admit because your I.C.U. is full, then it becomes really inappropriate, or I would say, immoral”.

    It is outrageous that UK medical staff may be put in this position due to the government’s incompetence.

    Dr John Puntis is the co-chair of Keep Our NHS Public

    Comments Off on Blanket DNACPRs are not the solution for panicked healthcare rationing

    BUYING BEDS FROM PRIVATE HEALTHCARE PROVIDERS

    Can the minister explain why the Government has chosen to buy beds from private healthcare providers rather than requisitioning private hospitals and staff as the Spanish Government has done?

    The Centre for Health and Public Information (CHPI) has demonstrated that the government’s deal to purchase their entire capacity in return for covering their “operating costs, overheads, use of assets, rent and interest” is in effect a bailout for private hospitals. https://chpi.org.uk/blog/who-benefits-from-the-nhss-bailout-of-private-hospitals/

    Based on the accounts (2017 or 2018) of their operating companies, four of the largest private hospital providers (Spire, BMI, Nuffield, Ramsay) have an average gearing (total debt / equity) of over 300%. This means that they are heavily reliant on debt to finance their businesses, and are therefore potentially vulnerable to a prolonged period of low or non-existent demand.

    Without the deal, private healthcare providers would face the same fate as other industries who are experiencing a significant drop off in demand due to the virus. Crucially it also represents a bailout for the landlords and lenders of the private hospitals whose investments would also be at risk if the hospitals were unable to honour their payments.

    Why is the Government acting to protect private healthcare providers, and the profits of their investors, rather than taking the alternative approach of requisitioning private hospitals and their staff to support the NHS?


    What payments will the government have to make for requisitioned private health care capacity?


    Can the government provide assurances that the contracts signed for ventilators from known Tory backers like Dysons and JHB are of the required standard to enable gradual re-establishment of breathing?

    CARE AND NURSING HOME RESIDENTS

    Are you confident that all care and nursing home residents who are symptomatic are being tested for COVID-19?


    Why there is a difference in priority for the NHS and Care sector?

    Please supply any figures of death rates and infection rates as incidence and prevalence.  It should surely be easy for every care home retirement village and other institutions to collect daily stats and report regionally.

    How can you ensure that Trusts, NHS charities and local authorities work together to provide a system coordinated response?


    PUBLIC HEALTH ADVICE

    Why does the Government advise 7 days isolation for those who are symptomatic for COVID-19 while the WHO advice, followed in most of Europe is to isolate for 14 days?

    CONTACT TESTING, TRACING AND NUMBERS

    • What is the best estimate of the proportion of the population who have had Covid-19?
    • What is this estimate based on?
    • Is there any community surveillance for Covid-19 taking place? If so what are the details? What are the results?
    • How much contact tracing is done for patients who have been diagnosed as having Covid-19?
    • What role will contact tracing play in managing the easing of the current public health measures?
    •  What steps is the government taking to have a robust tracing capacity in place as we emerge from the current public health measures?
    • What criteria will be government use in terms of R0, new cases, patient deaths, herd immunity, contact tracing capacity etc to inform any decision to ease current public health measures?
    • How many of the NHS and care staff who have died in this epidemic are from overseas?

    The figures now emerging for the deaths of those working in the NHS cover the very substantial numbers of outsourced workers, a cohort that the public just don’t know about. Aside from being cheaper and allowing corporates to cream off a profit, these workers are treated as second class employees, with worse conditions, oppressive supervision, abysmal support and non-existent occupational health. Aside from low pay and the insecurity of zero hours contracts there are countless ways in which they are coerced to “just get on with it”, risking serious harm.

    The DHSC is undercounting numbers of health workers infected, can the government give assurances that they will provide accurate figures and include out sourced agency and locum staff?

    Hospitals have been asset-stripped for years by outsourcers, PFI partners and management and IT consultants, and Lansley’s Health and Social Care Act has undermined the structural coherence of the NHS. The malign results of this we now see with hospitals struggling against collapse with the untold sacrifices of heroic staff. And even here, the government (Matt Hancock) has consistently under stated the numbers of deaths of NHS staff: on Friday he said the number was 19 when it was 31 and he repeated the 19 figure on Saturday when it was in the 40s and in the public domain. Can we be assured that Mr Hancock will provide accurate figures and strive to remain on top of his brief?

    We know the numbers of front line workers losing their lives to Covid is now in excess of 40  – why has the government not acknowledged this nor yet apologised for their gross mishandling of PPE supplies.


    The finger-prick antibody tests that Hancock has ordered are widely regarded as unreliable with low sensitivity and specificity. Can we be assured that this is not the case?


    With respect to testing – why has the government wasted millions on a test which quickly proved not to be reliable. Who sanctioned this?


    What are the step changes to increase current testing capacity to 100,000 by the end of the month?  When will each new site come on stream and how much capacity will be added – and then say what actually happened – on a weekly basis?

    What really is the approach to testing front line staff? Pretending to test all front line staff is pointless as someone who is negative today could be positive tomorrow – so this would mean testing everyone everyday which would need significantly more capacity than planned. Are they testing staff who are currently self isolating and not at work and those who become symptomatic?

    What is their approach to testing care home residences and staff? Initially this should focus on those home with assumed cases and needs to be done in a consistent way

    FUTURE FUNDING

    We are pleased to hear of the Prime Minister’s recovery, and noting his praise for the dedication and commitment of NHS staff, will he now reinstate the NHS as the preferred provider when work is commissioned?

    Given the inability of local Public Health teams to provide an adequate local response to the epidemic given recent cuts and reorganisation, will be now ensure the reinstatement of Public Health powers and budgets?


    Public support for the NHS has never been higher, arguably because the population understands better than this and the previous Tory government how vital it is to national life. Will the government undertake to reinstate the NHS on its former footing as a National health service, and undertake to spend the same proportion of GDP on it as comparable countries?

    COMMUNITY SERVICES

    There is likely to be a wave of people being discharged from hospitals who remain very ill. Given the shortfall in GP and District Nurse numbers, how does the SoS expect that these patients will be adequately supported?

    Is now the time to commit to a significant increase in District Nurse numbers with upskilling to enable more people to remain at home post-Covid with GP support?

    PPE

    PHE has continually prevaricated about the spec – and in comparison to other countries still falls short, yet even that is still proving impossible to obtain for too main frontline workers, both in hospitals and in the community. We know the supply chain in England in particular is flawed because the Cabinet Office brought in an a ‘middle man’ without any experience of handling PPE or the manufacturing industry. Cabinet Office must be told they should be stood down with immediate effect from their role in England and allow industry to liaise directly with hospital Trusts, primary care bodies and care organisations for fast track targeted purchasing to unblock this ASAP.

    Why has the government persisted in shipping PPE/ventilators equipment from abroad  –  some of it substandard or out of date  – when we have received skilled offers from such as GTech in Worcester offering 30k ventilators ( not CPAPs) and the British textiles manufacturing industry being continually blocked from their significant capacity to provide PPE  – some of which is now going abroad in frustration?

    Tough Questions

    1 Comment

    SHA COVID-19

    Blog 5  

    12th April

    The Socialist Health Association (SHA) has published its weekly Blogs on the COVID-19 pandemic since the 17thMarch 2020. This provides a narrative of political and health issues over the past 5 weeks.

    A lot has happened over the past week and we will address some of these developments from our socialist health perspective.

    1. Situation update

    So far in our Blogs we have drawn attention to how the UK has been to slow to respond to the pandemic threat since the warnings from Wuhan started at the end of December 2019 and were confirmed in mid January 2020. This was despite the fact that an infectious disease pandemic ranks No 1 in the UK government risk register and we knew that this was a Sars like virus.

    The Tory government had not paid attention to the various simulation exercises that have been done over the past few years most notably Exercise Cygnus in 2016, during Jeremy Hunt’s time as SoS for Health. The exercise simulated ‘swan flu’ and showed that there was a serious risk that the NHS would be overwhelmed with lack of PPE and insufficient ITU beds. Recommendations to increase stockpiles were ignored in a time of austerity and PPE equipment such as face visors were evidently deemed too difficult to store. It is interesting to note that many of the facemasks have a use by date from before that time. Even as far back as the Swine flu pandemic in 2009 the relatively small number of ITU beds has not been addressed and we have seen how relatively low the NHS acute bed numbers, as well as the ITU beds/1000 population are comparatively. The government have it seems been more interested in preparing for Brexit at the end of January than for a real pandemic threat. Instead of building up stockpiles of ventilators and other equipment the government have had to turn in emergency to their friends such as Dyson and JCB but it is no surprise that delivery takes time as medical equipment needs testing and tough quality assurance.

    We have also pointed to the laisser faire approach to this pandemic even after it became a global threat. The scientific advisory group ‘modellers’ had by late February warned the government that the country faced the possibility of suffering 500,000 deaths from Covid-19. So at this time we knew that this was a virulent virus that was easily transmitted person to person and if not suppressed would spread within communities rapidly and seek to move out to new areas. The religious community in South Korea was a clear case of transmission from Wuhan and rapid spread within a religious community in Daegu. In mid February this was traced back to Patient 31 by their effective contact tracing and testing protocol. South Korea, to their credit, stamped on the virus and did not allow it to spread and has only had just over 200 deaths within its population of 52m who continue to enjoy freedoms outside lockdown.

    As the virus began to spread we saw countries closing their borders and screening people arriving from air or sea. New Zealand and Australia are examples of this tough policy and they have managed to keep the virus from penetrating the country at scale. New Zealand has had four deaths and Australia 60 by 12th April. The UK note is also surrounded by sea and with Ireland is a separate landmass from Europe but we have not introduced any significant border health checks at any time.

    In Europe we all watched with mouths open when health services in Lombardy were overwhelmed and people who had been on skiing holidays had already returned to the UK and started to spread the virus here. What actions did the Border Forces take? How actively did we follow up reports of fever and cough in returning travellers? Do we even now check peoples travel history and report symptoms on return to the UK? Our death rates now are moving to exceed Italian and Spanish rates and compete to be the worse in Europe.

    Some of the success of countries such as Germany and Denmark has been closing their borders and undertaking health checks, testing and advising quarantining/isolation if needed. Denmark closed the border on 13th March (final day of the UK Cheltenham Gold Cup meeting in the UK) and a few days later closed schools, universities and banned gatherings of more than 10 people. Denmark which, is a small country of only 5.6m, has had 273 deaths by the 11th April. Scotland in comparison with a population of 5.5m has already had 566 deaths. Denmark is now considering loosening the lockdown requirements whereas Scotland still fears new spread.

    However frightening Covid-19 virus is in terms of its effects on people it is a virus, susceptible to soap and water and unable to spread between human beings unless spread by aerosol or droplets by coughs and sneezes or hand to face contamination. Basic communicable disease methodologies work – hence the WHO advice to test, trace and treat by isolation. No need to rely exclusively on mathematical models but tried and tested methods of infectious disease control measures. We hear very little of the most basic ‘tests’ namely asking people about their contact history and what symptoms they have. In the early days of this pandemic we had all heard about the cardinal symptoms and signs of Dry Cough and Fever. In the current situation that is enough for classification as a possible if not probable case. This then needs follow up with an antigen PCR test to confirm. Tracing other contacts and testing them and all contacts need to be isolated/quarantined. We realise that we have missed the boat now but should acknowledge that this is basic public health methodology in use for decades but not used here even at the start of the epidemic spread in the UK. Public Health trainees were often told – use more shoe leather than computer software when involved in outbreak management. The UK seems to be bemused by other countries testing temperatures with thermal imaging meters or checking if people have stayed in isolation as advised. God forbid people wearing face masks either!

    In earlier blogs we have also referred to the reluctance to learn from policies in countries that have been successful in suppressing the pandemic. Take facemasks, which are used widely in Asian countries, who have had success in controlling spread. It just seems to make sense (have face validity) that a virus transmitted from nose and throat to others would be hindered in person to person spread if everyone was wearing a face mask. A recent review by the respected evidence based group in Oxford recommends the precautionary principle in a time like this. The CDC in the US is recommending the use of facemask too especially as we look to reducing lockdown rules. Rather than say we need a randomised control trial – just do it! Of course in the UK it is almost impossible to buy quality facemasks, hand sanitiser gel or often latex gloves!

    The situation we find ourselves in is that PPE seems to be rationed and sadly there remain reports from NHS and social care clinical staff that they cannot get proper PPE supplies. Again we see TV reports of other countries in the world where many essential workers –non health care providers have access to PPE equipment which reassures them and is symbolic to others about the risk of cross contamination. Our bus drivers and other public facing non-NHS public servants have been exposed to risk.

    The government has struggled with scaling up the logistics and thanks to the Armed Forces supplies are getting through. However Public Health England (PHE) who were fast off the blocks once the Chinese Government shared the genome of Covid-19 have been unable to seriously scale up the PCR testing capacity. It remains to be seen whether the 100,000 tests by the end of April will be delivered. It is said by management consultants – ‘Never promise more than you can deliver’. It is also recommended; ‘don’t stretch the truth’. We have sadly seen this transgressed by Matt Hancock promising the ramping up of testing, supply of PPE. His boast of purchasing 3.5m antibody tests before they have been shown to be valid is embarassing. Reminds us of the Brexit Ferry contract from a company that had never managed a Cross Channel Ferry service.

    The vaccine is of course much more important than the antibody test and we applaud the progress that researchers have made but do caution that we should not promise more than can be delivered. A safe and effective vaccine requires safety and effectiveness trials and this all takes time.

    1. Inequalities and risk factors

    One of the striking findings of this pandemic is the susceptibility of Black and Minority Ethnic (BAME) groups to the virus. It has been striking that the first group of doctors who have given their lives to the virus have been Black or South Asian heritage. Some of the areas where the NHS has had pressures are also areas with relatively high Asian populations (Brent, Luton, West Midlands). This risk factor will of course have social, economic and cultural determinants alongside some biological factors such as a higher risk of diabetes and cardiovascular disease. There are very few health conditions where socio-economic factors do not affect incidence and prevalence. The two hospital porters from Oxford who died recently of Covid-19, were out sourced workers, both of Filipino heritage and like doctors and nurses exposed to risk at work. Their NHS fellow workers allegedly offered to share PPE in the early stages of the pandemic!

    We are familiar with the social gradient of disease and death. So it is no surprise that in the USA we are also seeing African American citizens are losing their lives disproportionately. For example in Michigan 15% of the population is black, but account for 40% of the deaths. Chicago has a 30%  African American population and this group have a 70% death rate. These ratios are also reflected in Louisiana in the deepsouth, especially New Orleans, where the Mardi Gras celebrations continued regardless of the pandemic.

    These global health inequalities will also be mirrored in Africa when the virus moves down that continent. Think of our discourse about the dearth of PPE and medical equipment such as ventilators. In the Central African Republic of the Congo (CARC) with its 5m population it is estimated that they have 3 ventilators. On the international market prices have responded to demand. Costs of a ventilator on the market have jumped from $9000 to $20,000 over the past few weeks. The CARC‘s GDP/capita is $1.3 per day with very poor health infrastructure.

    It is good to hear that the British Government has donated Aid to the UN and WHO to support Low and Middle Income Countries combat the pandemic. It is in all our interest that these countries and their people weather the storm. One World and Planetary Health – we are all mutually dependent.

    1. 3. Political Leadership

    One of the issues that has emerged through the experience so far with this public health emergency is the quality of political leaders. We have already drawn attention to Denmark with Mette Frederiksen who is a woman and the country’s youngest–ever PM. Last week we referred to Angele Merkel’s clear leadership in Germany, which is doing extremely well so far in controlling Covid-19. Think too of Jacinda Ardern the Labour Prime Minister in New Zealand who in her short time as PM has had to deal with three different emergencies – the Mosque massacre, the Whakaari/White Island volcanic eruption and now the Covid-19 pandemic.  She has provided exemplary leadership by going hard and going early. She placed the country in total lockdown on the 25th March and softened the blow by using a slogan – ‘be kind’. Epidemiologists have praised her ‘brilliant, decisive and humane leadership which has seen New Zealand achieve a remarkably efficient implementation of the elimination strategy. Of course the country will still be susceptible to Covid-19 but the health protection measures have worked so far and unlike the UK will not have such high death rates/population.

    1. A great science policy failure?

    Richard Horton, Editor of the Lancet, has said that the global response to Sars-CoV-2 is the greatest scientific policy failure in a generation. The signals were clear. Hendra in 1994, Nipah in 1998, Sars in 2003, Mers in 2012 and Ebola in 2014; were all caused by viruses that originated in animal hosts and crossed over into humans. Covid-19 is caused by a variant of the same coronavirus that caused Sars. The US Institute of Medicine (IOM) in 2004 concluded that; “the rapid containment of Sars is a success in public health, but also a warning. If Sars recurs health systems worldwide will be put under extreme pressure and continued vigilance is vital”

    The IOM report quoted Goethe:

    Knowing is not enough; we must apply.

    Willing is not enough; we must do”

    Sadly we have known about this threat since Sars emerged in 2003 and we have undertaken simulation/emergency planning exercises as recently as 2016 which tested resilience for ‘swan flu’. However it looks like we did know but we did not act.

    13.4.2020

    Posted by Jean Smith on behalf of the SHA Officers and Vice Chairs.

    2 Comments

    While we welcome the £5bn emergency fund for the NHS and other public services and the open ended commitment made by the Chancellor that the government will provide whatever the NHS needs to meet the challenge of COVID-19; we are concerned to point out three big issues on sustaining an NHS, social care and protecting all workers including those in the gig economy.

    The Chancellor re-iterated the discredited election manifesto statements about 50,000 more nurses while we know that there are already 43,000  funded nurse vacancies. He repeated the mantra about 50 million more GP appointments while recruitment of young doctors to become GPs remains poor and it is not clear how this can be achieved in the short term. He reiterated the discredited election slogan about 40 new hospitals. Both staffing promises ignore the fact that it is not only money that is needed – the legacy of austerity cannot be reversed by a cash injection alone – training a GP/medical specialist takes 10 years. Turn the tap off for 10 years and turn it back on expecting accolades is not good enough.

    We are very concerned too about the immigration health surcharge, which is being increased to £624 per person. The NHS needs to continue to ethically attract health workers into our country for training and service. The surcharge will apply to EU citizens from January next year. This health surcharge is a serious disincentive and opens another pathway for Tories to introduce insurance charging into the NHS. The cost of collection as with all insurance schemes will be prohibitive.

    Social care has been ignored. Everyone involved knows that we should be investing in health and social services and even Jeremy Hunt who presided over NHS austerity is on record as saying that this is a glaring omission in the budget. You need to invest in health and social care and the budget is silent on social care. The budget statement of 8,700 words mentions social care twice only and the manifesto commitment of £1bn/year for 5 years seems to have been lost. Local government leadership role has been ignored such as their role in housing, childcare and social support in communities. The attention given to cars, roads, potholes, red diesel and fuel tax does not signal that the other existential emergency on climate change is being addressed.

    Finally we welcome the steps taken to move entitlement to SSP to day one but worry that the 111 service is already over stretched and should not have the burden of certification forced on them. The health and wellbeing of those who are not eligible for SSP, such as the estimated 2m part time and zero hours workers and the 5m self-employed is inadequately protected: the ESA is probably too small a compensation. Many will feel they have to continue to work, putting their own health and that of their families at risk.

    The SHA campaigns for health and social services to be free at the point of need and to be funded by general taxation. We know that the 10 years of Tory austerity has damaged the fabric of our NHS and we need to invest in capital and training of staff with confidence in long term growth and sustainability. In a modern society the social care services need to be an integral part of our system and should be planned together with joint investment. This budget has missed an opportunity to make this change.

     

    On behalf of the Officers and Vice Chairs

    1 Comment

    In the two decades since the publication of the Sutherland Royal Commission report on long-term care the issues around the cost of caring for an ageing population remains one of the major issues in public policy. And we remain no nearer to its resolution.

    While varying elements of catering for long-term care remain the responsibility of the UK Government, devolution has allowed a fair level innovation and diversity in approach including the introduction of free personal care in Scotland which was one of the main recommendations of the Sutherland Commission.

    In Wales the National Assembly’s Finance Committee has recently published a useful report on the matter from a Welsh perspective.

    In very broad terms the report looked at two inter-related issues i) delivering quality care and ii) how that care will be accessed and paid for.

    The report highlighted that while social care in under considerable financial pressure in Wales the level of spend has remained broadly flat in real terms between 2009-10 and 2015-16 compared to a 6.4% decline in England. None the less with an increasingly older population the per capita spending has reduced by 12%.

    In responding to this pressure, and despite the increase in numbers, there was evidence that fewer older adults were receiving care. It was suggested that this was in part a reflection of the Welsh Government’s policy to promote more self-reliance and a better matching of service to need but concerns was also expressed that eligibility criteria were being tightened which means that it is more difficult to access care.

    There is a greater proportion of unpaid carers in Wales compared to other parts of the UK and Europe representing 12% of the population. They are responsible for 96% of the care that is given in the community even though 65% of older carers have health problems of their own. The Social Services and Well-being Act (2014) in Wales was intended to increase support for carers but of the 370,000 carers only about 6,200 / year had an assessment with less than 20% receiving an offer of care. In response the Welsh Government has said that it is preparing a major publicity drive to make the carers more aware of their rights and to better equip social workers in their assessment of carers’ needs.

    In Wales the means testing for care services is more generous that in England with the Welsh Government committed to increasing the capital eligibility thresholds for residential care to £50,000 by the end of it present term. In addition there is a cap on the level of payments for domiciliary packages. There were concerns that these thresholds could deprive social services departments of vital resources but the Welsh Government grant support has prevented that from happening.

    The social care sector remains in a fragile state.. There are many instances in which private domiciliary care companies have handed back contracts to local authorities who have, in some instances, been obliged to in-source the service. The residential care sector is also under pressure particularly smaller more community based care homes. In part this is down to the fees that it is able to agree with social services departments. The rates vary across Wales, often inexplicably, and the Welsh Government has committed itself to introducing a new assessment methodology to bring greater transparency and consistency in the fee structure. In addition it is hoped that this new process will address the concerns where self-funding care home residents are paying fee levels which are, in effect, cross subsidising the public sector.

    These problems are compounded by the difficulties in the recruitment and retention of staff with some providers reporting turnover levels of 25-33% every year. There are real issues of pay, status and training that need to be addressed. The Welsh Government has been promoting the voluntary registration of domiciliary care workers from 2018 with the target of compulsory registration by 2020. As well it is committed to reducing the use of zero hours contracts and to requiring a delineation between travel and work time in the working day. However it is still difficult to keep care staff when faced with better pay and conditions in other parts of the public and private sector. And all of this is likely to be exacerbated by the UK’s departure from the EU.

    The report also looked at future funding models. The Welsh Government believes that a UK wide solution would be preferable but the continuing postponement of the UK Government’s green paper on social care means that other options will have to be looked at including the use of Welsh income tax powers which will be available from April 2019.

    In addition a lot of consideration was given to the social care levy which has been advanced by Prof Gerry Holtham and Tegid Roberts.. Their proposal involves the HMRC to collect a levy between 1-3% depending on a person’s age. This sum would be lodged in an investment fund and used to pay for an enhanced social care package. However the report strongly believed that there needed to be a wider public debate on what the public could expect to receive in return for their contributions. The Welsh Government has established an Inter-Ministerial Group on Paying for Social Care with five separate work streams to consider the the full range of the implications of such a social care levy.

    The Welsh Government’s policy statement A Healthier Wales (2018) confirmed its intent to support closer collaboration between health and social care in Wales using regional partnership boards as their main instrument to achieve this. Concerns were expressed that Wales lacked a sufficiently robust evidence base to inform social care planning thought the Welsh Government was not convinced about this. There was also a recognition of the very useful role that the Intermediate Care Fund has played in facilitating joint working between health and local government bodies.

    Overall this is a useful report which highlights many of the key challenges facing social care in Wales. However there is little evidence that the Welsh Government is in a position to move toward an fully integrated “health and care service” free at the point of use or that it is likely to seek the devolution of the administration welfare benefits service which could allow for a more innovative proposals for the paying for the care of older people in Wales.

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    I can’t recommend this film – which focuses mainly on older political activists campaigning for the NHS – too highly.
    (Statement of competing interests: I feature briefly in the film)

    Pensioners United

    Directors: Phil Maxwell, Hazuan Hashim

    Country: UK

    Running Time: 75′

    Year: 2018

    A potent account of a passionate group of pensioners who unite together to fight for a better life for themselves and those who will follow them. Starring Jeremy Corbyn, Harry Leslie Smith, the late Tony Benn, and thousands of inspirational pensioners from across the UK.
    ~ Allyson Pollock

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     Court of Appeal grants NHS campaign group permission to appeal against NHS England’s new Integrated Care Provider contract

    Some very good news – which also means NHS England is consulting on an ACO contract that may be unlawful.

    They knew full well that was a possibility, despite their protestations in the consultation document that both Judicial Reviews had ruled in their favour.

    (They have rebranded the ACO contract the Integrated Care Provider contract and their consultation runs until 26 Oct.)

    We shall be putting out more info shortly about this.

     

    The Court of Appeal has issued an order granting campaign group 999 Call for the NHS permission to appeal the ruling against their Judicial Review of the proposed payment mechanism in NHS England’s Accountable Care Organisation contract.

    The Accountable Care Organisation Contract (now rebranded by NHS England as the Integrated Care Provider contract) proposes that healthcare providers are not paid per treatment, but by a ‘Whole Population Annual Payment’, which is a set amount for the provision of named services during a defined period. This, 999 Call for the NHS argues, unlawfully shifts the risk of there being an underestimate of patient numbers from the commissioner to the provider, and endangers service standards.

    In April, the High Court ruled against the campaign group’s legal challenge to NHS England’s Accountable Care Organisation contract – but the group and their solicitors at Leigh Day and barristers at Landmark Chambers found the ruling so flawed that they immediately applied for permission to appeal.

    Although fully aware of this, on Friday 3rd August – the day Parliament and the Courts went on holiday – NHS England started a public consultation on the Accountable Care Organisation contract – now renamed the Integrated Provider Organisation contract.

    The consultation document asserts that the payment mechanism in the ACO/ICP contract is lawful, because:

    “The High Court has now decided the two judicial reviews in NHS England’s favour.”

    Steve Carne, speaking for 999 Call for the NHS, said

    “It beggars belief that NHS England is consulting on a contract that may not even be lawful.

    And a lot of public funds is being spent on developing the ACO model – including on the public consultation.

    We are very pleased that 3 judges from the Court of Appeal will have time to consider the issues properly.

    We shall shortly issue our stage 5 Crowd Justice appeal for £18k to cover the costs of the Appeal.

    We are so grateful to all the campaigners and members of the public who have made it possible for us to challenge the lawfulness of NHS England’s attempt to shoehorn the NHS into an imitation of the USA’s Medicare/Medicaid system.

    We will not see our NHS reduced to limited state-funded health care for people who can’t afford private health insurance.”

    Jo Land, one of the original Darlo Mums when 999 Call for the NHS led the People’s March for the NHS from Jarrow to London, added,

    “All along we have been warning about the shrinkage of the NHS into a service that betrays the core principle of #NHS4All – a health service that provides the full range of appropriate health care to everyone with a clinical need for it, free at the point of use.

    Since we first started work two years ago on bringing this judicial review, there have been more and more examples of restrictions and denials of NHS care, and the consequent growth of a two tier system – private for those who can afford it, and an increasingly limited NHS for the rest of us.”

    Jenny Shepherd said

    “NHS England’s rebranded Accountable Care Organisation contract consultation is a specious attempt to meet the requirement to consult on a significant change to NHS and social care services.

    We don’t support the marketisation of the NHS that created the purchaser/provider split and requires contracts for the purchase and provision of services.

    Integration of NHS and social care services, in order to provide a more straightforward process for patients with multiple ailments, is not aided by a system that essentially continues NHS fragmentation.

    This new proposed contract is a complex lead provider contract that creates confusion over the respective roles of commissioner and provider. It requires multiple subcontracts that are likely to need constant wasteful renegotiation and change over the duration of the lead provider contract. This is just another form of fragmentation, waste and dysfunctionality.

    The way to integrate the NHS and social care is through legislation to abolish the purchaser/provider split and contracting; put social care on the same footing as the NHS as a fully publicly funded and provided service that is free at the point of use; and remove the market and non-NHS bodies from the NHS.

    Such legislation already exists in the shape of the NHS Reinstatement Bill.”

    The campaign team say they are determined in renewing the fight to stop and reverse Accountable Care. Whether rebranded as Integrated Care or not, they see evidence that it is the same attempt to shoehorn the NHS into a limited role in a two tier healthcare system that feeds the interests of profiteering private companies.

    Steven Carne emphasised,

    “It is vital that we defend the core NHS principle of providing the full range of appropriate treatments to everyone with a clinical need for them.”

    999 Call for the NHS hope the 2 day appeal in London will happen before the end of the year. The Appeal will consider all seven grounds laid out in the campaign group’s application – with capped costs.

    Details on the first instance judgment can be found here, and the judgment itself here.
    David Lock QC and Leon Glenister represent 999 Call for the NHS, instructed by Rowan Smith and Anna Dews at Leigh Day.

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    To reduce the costs of old age, we must improve the entire life course

    Far from being predetermined, the course ageing takes is subject to a variety of influences throughout one’s life. This is something that policymakers have so far failed to appreciate, argues Alan Walker. He makes the case for a new strategy which focuses on the whole life course, with the intention of preventing many of the chronic conditions associated with later life.

    Policymakers and social policy analysts are guilty of neglecting ageing, despite the fact that it is now recognised officially as a ‘grand challenge’. However, it is not ageing that is in the focus of official social policy orthodoxy, but old age. Moreover, as the periodic hand-wringing about the ‘burden’ of growing numbers of older people demonstrates, this unique historical phenomenon is regarded widely as a negative development: later life is a ‘natural’ period of decline and this means ever increasing health and social care costs. The 2017 General Election witnessed a particularly poisonous version of this depressing conclusion. The recent IFS/Health Foundation report on future health and social care funding draws the same conclusion, albeit in highly measured terms devoid of political rhetoric.

    By focusing on old age rather than ageing, social policy analysts have forsaken what should have been a leading role in responding to one of the biggest challenges facing the world. This space has been claimed instead by orthodox economists, whose assumptions and instruments, such as dependency ratios, are inherently negative about population ageing.

    From this starting point it is common for projections to be made of future health and social care costs based on present day demand and expenditures. In other words, instead of asking if rising demand is inevitable and, if not, what social policy approaches might mitigate it, it is assumed that more older people means more health and social care spending. For example, in its central projections of future health spending the Office for Budget Responsibility assumes that the health of an individual of a given age and sex does not change over time. Put differently, more years of life at older ages means an expansion in the number of years spent in ill health.

    It is time for a fresh start and a new perspective. Rather than focussing only on old age and older people, we need to foreground the ageing process itself. This radical shift in emphasis should lead to conversations about how the chronic conditions associated with later life, which are the principal drivers of demand for health and social care, can be prevented or, at least, postponed. In place of the demographic despair behind many cost containment strategies is the potential for savings for reinvestment and, more importantly, substantial improvements in well-being and quality of life for eventually millions of people. The question why this deceptively simple point has been ignored for decades highlights the barriers to prevention, which I will return to later.

    First, what is the evidence behind this call for a new policy approach? Recognising the highly complex nature of the ageing process scientists from a wide range of disciplines have been working together to both improve understanding and to fashion appropriate responses. Leading examples of such multi-disciplinarity are the UK New Dynamics of Ageing Research Programme and the European project Mobilising the Potential of Active Ageing.

    The core conclusion from this massive body of recent research is that, while ageing is inevitable, it is also malleable: the precise course that ageing takes is not predetermined but rather subject to a variety of influences. Not only is there no ‘ageing gene’ but, in practice, genetics play only a minor role, around one-fifth of the association with disability and cause of death, while a host of other external and ‘environmental’ factors are the major influences. Thus loss of functional ability is often wrongly seen as an inevitable consequence of ageing whereas, in fact, it results from a variety of non-genetic causes, including inactivity.

    How we age is shaped by the social, political, and economic environments into which we are born and within which we develop and live our lives. Poor housing, lack of access to clean air and green spaces, precarious and stressful employment, limited availability of fresh food, and the over-supply of health-damaging substances including alcohol, tobacco, and high calorific foods are well-known risk factors for the main chronic conditions that are associated overwhelmingly with older age – coronary heart disease, stroke, diabetes, cancer – which require medical treatment and long-term care. These poor living conditions can result in exposure to pathogens and stressful events, deprivation of positive social connections and health-damaging practices, all of which increase the risk of chronic conditions in later life and the resulting functional limitations. Air pollution is a huge environmental threat to health, resulting in 40-50,000 premature deaths annually in the UK and an unknown number of chronic disabilities. Poor housing contributes to a range of health conditions including cardiovascular disease, asthma and mental ill health.

    Tobacco use, poor diets, lack of physical exercise and excess alcoholic consumption are also all associated with the main causes of functional limitations in later life – adult obesity and smoking are the two biggest global drivers of chronic conditions and premature death. Inactivity results in a loss of fitness (strength, stamina, suppleness and skill). Variable exposure to these potentially avoidable risk factors helps to explain the UK’s large inequalities in life expectancy and healthy life expectancy, and the vastly different outcomes in old age, where two people of the same age may have sharply contrasting capabilities. For example, research on frailty in later life found that older people (65+) who were wealthy and lived in affluent neighbourhoods had half the amount of frailty compared with those who were poor and living in deprived neighbourhoods. At the other end of the life course, Public Health England figures show that 11.7% of children aged 11 were obese in 2017 among the richest 5% but, among the poorest 5%, 26% were obese.

    Once the causes of ageing are understood, and the evidence is now overwhelming, the next step should be relatively simple. Since ageing is malleable, as well as individual actions to own and attempt to modify the generally assumed path towards old age, social policies also have a big role to play in trying to reduce the prevalence and severity of chronic conditions.

    As well as urgent action on unhealthy production and consumption, the prioritisation of ageing requires a longer term strategic approach. My favoured term for this strategy is ‘active ageing’ but the title is far less important than the substance. The two essential ingredients are: a life course focus, and an explicit intention to prevent both chronic conditions and their grossly unequal distribution. In practice this strategy would entail specific actions at different stages of the life to promote knowledge about ageing and the actions that can ensure increases in healthy life expectancy. For example, as well as combating child poverty and reducing inequalities in access to education, all children need to be introduced to the reality of the 100+ year life-span and taught about the ways in which they can reach it healthily.

    A life course orientation to the promotion of healthy life expectancy would entail specific measures geared to its different stages, including childhood, working, and later life. Also, because of the very wide inequalities in health expectancies we will need to disproportionately invest in approaches that effectively address the needs of deprived areas and groups, including culturally sensitive interventions for people of black and minority ethnic origin.

    One measure that transcends all age groups is the promotion of physical exercise: the evidence on its beneficial effects in preventing chronic physical and mental conditions is now so robust that a large-scale national programme is warranted. Exercise improves fitness and, with it, functional ability and resilience. Even small amounts of regular physical activity have a positive health effect and this effect seems to hold regardless of gender, race, ethnicity or age. Moreover improved fitness has a beneficial impact on cognitive ability, not only in midlife but into old age as well. Indeed, exercise may reverse a decline in functional capacity and fitness that has already occurred and be of benefit to those who already have chronic conditions.

    The striking characteristic of these active ageing measures is the combination of big potential impact and low cost. So why have they not been pursued with vigour officially at scale? The difficulty of switching resources from treatment to prevention is well known and has been rendered even more challenging by service cuts in the name of austerity (eg. smoking cessation services). In addition, there are powerful vested interests in later life disability and behind unhealthy production and consumption. Short-term political horizons militate against longer term strategies, and some politicians are ideologically opposed to the collective action required to deliver a comprehensive long term approach like active ageing.

    Finally, even if the massively upscaled preventative approach to the life course advocated here was introduced tomorrow, there would still be a need for remedial interventions to reduce the personal impact of chronic conditions, such as hip and knee replacements, to enable people to remain active for as long as possible. There is evidence too that minor muscle strengthening exercises by very frail older people can improve both physical and mental health. In the longer term an active ageing strategy for all ages would help to postpone the need for remedial interventions and also the need for long-term care.

    First published on the British Politics and Policy blog

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    Long-term care is a policy chestnut which seems to resurface every couple of years, under UK governments of all colours. Each time there is extensive analysis and review undertaken; much handwringing about how costly any approach will be; and various options are considered and rejected. Green Papers, White Papers and even legislation may follow, before the process grinds to a halt once more, and the issue is parked in the ‘too difficult’ red box until such time as it becomes expedient to have another go. So here we are again.

    The launch of the Conservative Party manifesto during the general election campaign in May 2017 saw Theresa May signalling a volte-face on long-term care and shelving the implementation of the capped cost model, only recently enshrined in the 2014 Care Act, and yet to be adopted. The chaos which followed, with attempts at offering ‘clarification’ on the policy, underlined the lack of any coherent policy or any evident grip of the issues. The bear pit which the manifesto had unwittingly dug for the Party was apparent in the critical reaction to the so-called ‘dementia tax’, and the failure to resolve the matter was probably at least in part responsible for the Conservatives’ fall from grace and the loss of a majority at the election in June.

    long-term care

    Since the summer, what should be done about long-term care has been the elephant in the Cabinet room. Like many other issues, it has been overshadowed by the ongoing uncertainty, confusion, and turmoil of Brexit, to which everything else continues to play second fiddle. Nonetheless, the Queen’s Speech had acknowledged that the government would “bring forward proposals for consultation” on the future of social care. Since the speech there has been little or nothing to indicate when or if such a consultation would occur; there was considerable speculation that a paper might appear in the autumn, but nothing emerged.

    Finally, on 16 November a written statement to Parliament from First Secretary Damian Green  announced that the government will “publish a green paper on care and support for older people by summer 2018. The paper will set out plans for how government proposes to improve care and support for older people and tackle the challenge of an ageing population.”

    This is not a social care green paper. As other commentators have also pointed out, the focus is solely on older people. Care for younger disabled adults, including people with a learning disability will not be part of the green paper but will be addressed by a parallel programme of work across government. Failing to address the entire population needing care and support – or who may do so in the future – is short-sighted; many younger adults with disabilities or long-term conditions will become older people with those conditions – how will the transition between those age groups be managed? There is already considerable disquiet about age inappropriate facilities for younger disabled adults; people with degenerative conditions who find there are no residential facilities for their needs and that they are placed instead in care homes for older people lacking specialist facilities for their needs.

    There are risks too that a segmented approach to long-term care policy will deepen divisions between generations and encourage the already entrenched and negative view of older people solely as a burden on the rest of society. There is an opportunity for a new social contract to be developed that unites generations and spreads risk across populations, but it won’t be addressed by an approach that salami slices needs in this way.

    A further glaring omission from the green paper announcement is any mention of family carers. A new national carer’s strategy had been in development in 2016, and involved extensive on-line consultation. The website for the strategy states blandly ‘we are analysing your feedback’, but was last updated on 2 June 2016, so that seems unlikely. It was widely anticipated that the delayed strategy would instead be incorporated within the green paper, but there is no sign of it, and the failure to address the needs of family carers who continue to provide the majority of care and support is deeply troubling.

    The green paper is not imminent; Damian Green’s statement indicated it would be published “by summer 2018”, so there are several more months of inaction, uncertainty and worry for people concerned about whether and how they will pay for care.

    The failure to square the circle on social care and develop a solution that is equitable, affordable, transparent and sustainable, is of long-standing. The repeated dodging of the issue dates back at least two decades, and indeed the fault line between health and care established in 1948 is, in many ways, at the root of the difficulty of distinguishing between universal and means-tested health and care services.

    It is increasingly evident that short-term patching of the system cannot work. The much-cited ‘additional £2bn’ allocated to social care over three years barely touches the sides and fails to address the underlying deficiencies. At the same time an attempt to develop a non-partisan cross-party solution is in play with 90 MPs signatories to a letter to the Prime Minister on 18 November urging a new approach. The need for the Budget to address short-term pressures on the system is part of the demand, but more fundamental is the “proposal to establish a cross-party process in the form of an NHS and Care Convention in order to deliver a sustainable, long term settlement”.

    Without such a fundamental approach it is hard to see how the challenge of funding social care will be resolved. The history of the past two decades – from the Royal Commission on Long Term Care established in 1997, through multiple Green Papers, White Papers, Commissions, reviews and legislation – points to the complexity of the task and the failure of successive governments.

    The Local Government Association has acknowledged that “difficult, brave and even controversial decision-making will be required to secure the long-term future of care and support” for adults of all ages, and for carers who support them. But there is no alternative; politicians have circumnavigated this issue time and again; failure to find a lasting solution which has genuine cross-party commitment will lead inevitably to a replay of broken commitments, flawed legislation, and short-term political opportunism. This is unfinished business crying out for resolution, not another version of Groundhog Day.

    This was first published on the  British Politics and Policy blog

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    Late-life dependency and the social care crisis

    As winter and the flu season approach, health and social care services are bracing themselves for what has become the inevitable surge in older people falling ill. Simon Stevens, chief executive of NHS England has already warned that Britain may well experience the same heavy burden of flu cases that Australia and New Zealand are just coming out of. But it isn’t just hospitals that will feel the effect – when an older person who lives alone is admitted to hospital, they may not be able to be discharged as quickly as both sides might like because of delays in organising a package of care. Add to this mix a cold winter and/or fuel poverty, and England and Wales might be in line for another record year for excess winter deaths.

    However the crisis in social care provision is not just a winter phenomenon. Part of the problem is the greater numbers of old, and particularly very old, people due to the larger post-war birth cohorts and the steady increase in life expectancy over the last decades. What is most surprising is that there has not been more notice taken of these trends which have been visible for many years. Perhaps it is because some have equated longer life expectancy with a healthier population and, indeed, anecdotally there is a belief that today’s older adults are fitter and healthier than previous generations. But our recent research suggests this is not true.

    Living longer but with more care needs

    Over the last 20 years, men’s life expectancy at age 65 has increased by 4.7 years and women’s by 4.1 years. However, not all of these extra years are ones spent independent. Indeed we have seen from the Office for National Statistics that trends in healthy life expectancy and disability-free life expectancy are not keeping pace with gains in life expectancy with a resulting increase in the years with ill-health and disability. But it is difficult to equate these measures with the amount of care that older people may need.

    Our recent research is the first to be able to show that only about a third (36%) of the increase in men’s life expectancy was spent independent whilst for women it was only 5%. Most of the gain in women’s life expectancy (58%) was with low level dependency, requiring care less than daily. More worryingly 20-30% of the increase in life expectancy at age 65 over the last 20 years has been years requiring 24hr care. So the social care crisis is not just an issue of more older people but also that those older people are requiring significant amounts of care for longer than their counterparts 20 years ago.

    Against this trend of more years with significant care needs, a much greater proportion of highly dependent older people are now receiving care in their own homes rather than in care homes. Our research suggested that if these rates of dependency and care home residence remain, an extra 71,000 care home places for older adults with medium (daily care) and high (24 hr care) dependency will be required for older adults by 2025. As this is against the current climate of care homes closing due to lack of sustainability, it paints a bleak picture.

    Addressing a complex problem

    Solutions will be required at a number of levels. Our research suggests that alongside extra funding, there should also be a focus on maintaining independence and low level dependency for longer.

    Social care is a national issue but is presently devolved down to local authorities. This has meant that increasingly cash-strapped local authorities have to balance between providing care for their older population with their other responsibilities of education, public health, and infrastructure. The result is that care home providers are tending to build homes in more affluent areas where there are greater numbers of self-funders of care and where the care homes are therefore more likely to be viable in the longer term. Our results suggest that men aged 65 will, on average, spend 1.3 years requiring 24 hr care and women 1.9 years. If the state cannot provide the funding for this through taxation or other means, then long-term care insurance products need to be developed, thus allowing individuals to pool their risk and therefore balance out the individual variability in the years requiring care. Our estimates of years requiring different levels of care levels should reduce some of the uncertainty around this.

    Secondly, we need to convince older people and their families that much of ageing is malleable. There is good evidence from around the world that functional decline can be halted and even reversed if treated early. The majority of the increase in women’s life expectancy over the last 20 years has been in years with low dependency, requiring help with shopping, laundry and other household tasks, many of which require mobility and upper body strength. Both of these can be improved with regular exercises, or, in the longer term, with aids or adaptations. However this requires a positive action in the minds of older adults, their families, and their healthcare providers, that these are important functions to maintain and their loss should not necessarily be viewed as inevitable or irremediable.

    Back in the 1990s, the then government stipulated that general practitioners in the UK should offer each of their over 75 year olds an annual health check. Since this was implemented prior to evaluation, with little guidance on the factors to be assessed, and certainly no recommended scales or measures, it was hardly surprising that it failed. It was, however, a missed opportunity to begin to capture regular physical and cognitive function which could identify, and therefore begin to treat, early functional loss. A similar system in Denmark underwent evaluation in two areas and after showing improved outcomes (in both reduced functional decline and mortality) was then rolled out to the whole of Denmark. It is perhaps time to revisit the idea of annual health checks for older people with agreed outcome measures which could massively enhance the data already collected in general practice.

    These are not ‘either-or’ solutions, neither are they the only ones. What is certain is that solutions should be agreed and acted upon soon.

    This was first published on the British Politics and Policy blog.

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    My 91-year-old mother was deeply unhappy at the geriatric hospital in which she found herself after breaking her ankle.

    But we knew little of the alternatives. Official inspection ratings offer impersonal information. So how were we, her children, supposed to gauge the quality of other establishments offering care?

    Our saviour turned out to be Alison – my mother’s hairdresser. As a specialist in older, housebound clients, she had continued to do her customers’ hair as they moved to various hospitals or care homes.

    Alison gave us the names of three places nearby that our mother might prefer, and we arranged her transfer within 36 hours. It was a move which transformed the quality of her last few months of life.

    Unlike formal inspectors, Alison was an unthreatening, secret observer of each of the institutions she visited. She proved to be a knowledgeable and reliable guide. Without her, my mother’s life could have ended very differently.

    The trouble is, not every family is lucky enough to know an Alison.

    In the UK, people are expected to make their own choices about their own care in the final months and years of life. But how can people become well informed about different care providers, especially when a crisis forces decisions to be made at short notice? Alison revealed the importance of informal contacts and social networks in allowing individuals and families to make good choices.

    How could her role be made available to all families seeking similar information? Care settings for those nearing the end of life are, in terms of inspection, a bit like restaurants. Technical medical and nursing procedures, like a restaurant’s kitchen, need inspecting by technical inspectors. But most of the care provided at the end of a person’s life is not of the technical kind. It involves hard to measure factors like respect, a sense of belonging, and relationships with staff. It is in many ways like assessing a restaurant’s ambience. In the hospitality trade, this is something best considered by mystery customers who collectively author good food guides, or by informal online ratings like on TripAdvisor.

    Such assessments rightly abandon the myth of objectivity embedded in formal inspections. Potential consumers perusing TripAdvisor ratings understand them as subjective experiences to be taken on balance.

    So collective, honestly subjective, online ratings should be available for families to make informed choices about different care settings. For well-being over the course of life, we need to be able to read about customer experiences of health and care agencies just as much as we need to read about experiences of restaurants, hotels and holidays.

    A great example of what is needed is carehome.co.uk, which gathers and publishes reviews of care homes, along with other information provided by the home. Many of the care homes listed, however, have no reviews. Care at home is reviewed by the online database homecare.co.uk, although the vast majority of organisations that look after people in their own homes have no reviews.

    Those two websites are funded by industry subscriptions. Proposed reviews are authenticated and vetted before publication, and reviewers are advised not to publish complaints but send them direct to the agency. These safeguards should eradicate vexatious reviews, although they may also present an unrealistically positive overall view of user experience. The sites are, however, a step in the right direction.

    Of course, TripAdvisor-style ratings for the “last journey” tend to come not from the actual service-user or patient. Most reviews are from family and friends, which could be an issue. Complex family dynamics – such as guilt at putting parents into care, or anxiety that care costs are eating up the inheritance – can mean families are rarely the baggage-free observers that Alison was.

    Reviewing the situation

    Of more concern is that even the most loving, attentive and observant family member may know little about the person’s experiences at the hands of their paid carers. This might only be achieved by CCTV cameras, but do we really want care homes, hospital wards and (in the case of home care) even the person’s own home to become zones of electronic surveillance?

    No way of monitoring or collecting information will be perfect. And we should acknowledge that the trajectory of frail elderly dying is always uncertain. No one can predict how they will feel as bodies and minds fail, so all choices will entail a degree of guesswork.

    Rigorous formal inspection – and public enquiries when things go dramatically wrong – are of course essential. But if people nearing the end of life (or their families) are to adopt the prescribed role of informed consumer, comprehensive collations of user experiences are vital.

    End of life care is more important than booking a restaurant or the next holiday – so information needs to be just as good, or better.

    Originally published by The Conversation

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