Policy statement on a National Care Service.

Doctors in Unite believe that the current model for social care is not working and that this has been brought into sharp focus during the COVID 19 Pandemic. Care homes bore a huge burden of deaths during the first wave, for many reasons, but not least due to the fragmentation that privatisation has imposed on that sector. This has led to a lack of local capacity and national coordination of care for some of the most frail and vulnerable in society.

Social Care at home is in a similarly parlous state. Domiciliary care is also largely outsourced to the commercial sector and provided by a workforce on extremely low pay, poor conditions and zero hours contracts. Many workers are not paid for the time they spend travelling between clients. Workers have too little time to spend with clients and it is difficult for them to build trusting relationships.

We do not wish to reinvent the wheel. Keep Our NHS Public and the Socialist Health Association are launching National Care Support and Independent Living Service on 10th October, The TUC and the Labour Party, through Reclaim Social Care, have good policy on how social care should be organised which Doctors in Unite would be able to broadly align with. These are set out in the appendices at the end of this statement.

We believe that:

  1. Care is a basic human right and is good for society as a whole. There must be a national care service which is publicly funded, publicly provided and free at point of need. It should be paid for out of general taxation and years of underfunding must be reversed. The Keynesian Multiplier for care service is substantially higher than the 2.5 figure at which spending is self-funding because for every £1 spent on the service the economy benefits by £2.50 which generates £1 in taxation. Within reason, spending on services with a multiplier above 2.5, such as health, care, environments, education and welfare actually reduces the deficit and so is money well spent.
  • Private/for profit care services should be brought back into public control.
  • The national care service must be subject to local democratic control. Users, their families and workers, through their trade unions, must have a strong voice and local councils must be accountable. Neighbourhood health committees should be set up as we suggest in our earlier paper “Public Health and Primary Care”.  https://medicalpractitionersunion.files.wordpress.com/2020/05/public-health-and-primary-care.pdf   The service should be funded centrally but organised locally.
  • Users and their families must be at the centre of their care, which should be personally directed and flexible, but not through personal budgets. We acknowledge that users are usually best placed to determine the care that they need but we are concerned that personal budgets can be unnecessarily expensive and bureaucratic to administer and will give some an economic advantage over others with equal need. Everyone should be able to access the care that they require in the way which is most suitable for them as individuals without the need for personal independence payments. We would like to work with disability action groups to develop personally directed care while taking the economic inequalities out of the system. There must be proper funding and support in place to enable users to access the system and find services that meet their needs.
  • There is a broad spectrum and continuum in social care needs Doctors in Unite believe that the natural home of social care is within the local authority not the health service. Nevertheless, where necessary, a National Care Service and the NHS should work collaboratively for the needs of a user. There is no need to merge the two services.  It is unhelpful to classify a need as either social or medical, a need is a need. Services must be properly funded so that if someone needs a bath they get help with a bath without the historical arguments as to whether the need for that bath is social or medical.
  • The National Care Service should be funded sufficiently so that people can be supported to live independently if they wish. People should not be pressured to go into a care home because services, such as night sitting, are not available in the community or deemed too expensive. Similarly, residential care home options should be available if this is what people prefer and need.
  • Care must be dignified and both residential and domiciliary care should be comfortable, homelike and run by the local authority. Many small locally run services strive to provide this though often they struggle to remain viable. Bringing these providers into public ownership whilst maintaining their ethos would provide stability for staff and clients. Proper service planning would also end the geographic perversity such that residential care homes are set up not where they are needed but where the real estate is cheapest, meaning long journeys for relatives to visit their loved ones distant from where they live.
  • Domiciliary care should be brought back into social ownership under Local Authority control immediately. As already stated, users and their families must have a strong voice as well as fully engaging with care providers.Existing small locally run businesses could be organised to work collectively as not for profit cooperatives. Current owner managers could be employed by the publicly owned National Care Service with a national wage structure rather than owning the businesses. We think that many might prefer this as their jobs would be less precarious. A national care service should capture the ethos of the smaller organisations, providing comfortable homely care but relinquish the current commercial economic model. Smaller providers often aren’t able to respond to crises and weren’t prepared for the pandemic, for example, they had totally inadequate supplies of PPE. A national care service should take the best of all the models, be properly funded and brought back into public ownership.
  • Under a National Care Service care workers must be properly paid, we support an immediate 35% pay increase. Care workers must have a proper career structure with progression and training which must be funded and transferable, including into the NHS. These must be nationally agreed, along with terms and conditions, as is the case with Agenda for Change in the NHS. We would like to see an end to all zero hours contracts, though acknowledge that some workers do find their flexibility helpful. We therefore would support an opt in to a zero hours contract after three months of working, as is currently available in Wales.
  • All social care vacancies must be filled within a year.

  • Last but by no means least we must note that a large proportion of care workers are overseas migrants, many with precarious residency in the UK. Without these people a National Care Service could not function. We demand that they are all granted permanent status immediately and that care workers are regarded as essential workers for immigration purposes.

APPENDIX 1

KONP/SHA NACSIL demands:

Publicly funded, free at the point of use    Publicly provided, not for profit 

  • Nationally mandated but designed and delivered locally
  • Co-produced with service users and democratically accountable
  • Underpinned by staff whose pay and  conditions reflect true value & skills
  •  Meets needs of informal carers   Sets up an independent living task force

APPENDIX 2

Reclaim Social Care policy and demands:

https://www.reclaimsocialcare.co.uk/policy/

Reclaim Social Care is clear that the country requires social care to be:

  • based on supporting independent living for all
  • free at the point of use
  • paid for, like the NHS, through central taxation
  • brought into the public sector
  • staffed by people well supported and with a positive career structure
  • with financial support for voluntary carers 

Reclaim Social Care composited the below motion which is now Labour Party Policy:

SOCIAL CARE COMPOSITE RESOLUTION PASSED AT LABOUR PARTY CONFERENCE SEPTEMBER 2019

This was brought together from motions from across the country, many based on Reclaim Social Care’s text. It is now Labour Party policy.

Conference notes the current postcode lottery of Social Care funding and the real hardship and unfairness this causes, impacting on the most vulnerable within our society reducing life expectancy, health outcomes and wellbeing. 

Labour to develop a universal care and support service working with user groups, in collaboration with a national independent living support service and available to all on basis of need, based on Article 19 of the UNCRPD. 

England’s social care system is broken. Local Authorities face £700million cuts in 2018-19. With £7billion slashed since 2010. 26% fewer older people receive support, while demand grows. Most care is privatised, doesn’t reflect users’ needs and wishes, whilst charges increase. 

Disabled and elderly people face barriers to inclusion and independent living, thousands feel neglected. 8 million unpaid, overworked family carers, including children and elderly relatives, provide vital support. 

Make the provision of all social care free to recipients as is the case for health care under the NHS. 

A service:

  • That provides a new universal right to independent living
  • Enshrined in law and delivered through a new National Independent Living Service co-created between government and service users.

Consequences of marrying social care to the NHS include medicalisation, isolation, indignity, maltreatment, bringing social care under a struggling NHS umbrella is not the answer. 

Transfer responsibility for funding social care from the LA to the national exchequer through progressive taxation. 

Distribute funding to the LAs for social care on the basis of the population served (age, sex and deprivation) and the cost of care. 

Locally democratic and designed by service users and carers in partnership with LAs and the NHS, delivered as far as possible by service users. 

Publicly, democratically run services, designed and delivered locally, co-productively involving local authorities, the NHS and service users, disabled people and carers. 

Providing staff with nationally agreed training qualifications, career structure, pay and conditions. 

Fund social care to provide a pay rise of at least 35% to all care workers. 

Giving informal carers the rights and support they need. 

Conference resolves that within the first term of a new Labour government to provide a universal system of social care and support based on a universal right to independent living. 

https://www.reclaimsocialcare.co.uk/a/40563951-40565561

Summary

  1. Social care is in a deep crisis created by severe cuts enforced on local government by central government and the failure of the system to defend itself from these attacks.
  2. Integrated care is now proposed as a solution to the social care crisis, but not only is it not the answer, but it will harm, both social care and the NHS itself.
  3. Social care is a distinct public good state and it needs to be organised in ways that recognise its strengths and its role as an agent of citizenship for all.
  4. The problems facing social care today are the result of decades of poor policy-making and the refusal to put social care on a level footing with the NHS and other services.
  5. The resources necessary to transform social care into a universal public service are modest and can easily be achieved with the necessary political will.
  6. Universal social care should be implemented alongside a range of other reforms, including the reintegration of social care for children and adults.
  7. Creating the case for a decent social care system also demands the creation of a wider alliance for change and systems that can protect the system in the future.
  8. Better coordination of health and social care services will only occur if the NHS itself begins to work more effectively with citizens, families and communities.

APPENDIX 3

TUC Key recommendations:

https://www.tuc.org.uk/research-analysis/reports/fixing-social-care

Key recommendations

  • A new funding settlement: This year’s spending review should fully offset the cuts of the previous decade and establish future rises at a level that will allow local authorities to meet rising demand and improve pay and conditions for staff. 
  • Immediate funding to fill all social care vacancies: In a time of rising unemployment, social care could provide a steady source of new decent jobs. The government could act now to unlock 120,000 existing vacancies, to help those losing their jobs.  
  • Fair pay and conditions for care workers: To provide sustainable livelihoods and an attractive career, all social care workers must get a sector minimum wage of at least £10 per hour. There must be an end to the zero-hours contracts, and poor or non-existent sick pay that put social care workers at risk during the pandemic. And all social care workers must have guaranteed opportunities for training and progression. 
  • A national Social Care Forum: A new body is needed to bring together government, unions, employers, commissioners and providers to coordinate the delivery and development of services, including the negotiation of a workforce strategy. 
  • A reduced private sector role: The government should strengthen rules to prevent financial extraction in the care sector and should phase out the for-profit model of delivery, so that all public funding is used to deliver high-quality services with fair pay and conditions for staff. 
  • A universal service free at the point of use: The changes above can be made quickly. Longer-term, the government should make social care a universal service, paid for through general taxation to ensure high-quality social care can be quickly accessed by everyone who needs it, in every part of England, without any variation in cost and qualifying rules. 

Blanket DNACPRs are not the solution for panicked healthcare rationing

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

Thoughtlessly placed DNARs do harm to patients and doctors

Doctors in Unite reiterate our opposition to any scoring system being used as a blanket cut-off to people accessing hospital care. We understand that conversations with patients about their wishes with regard to treatment and end of life care can be very helpful to ensure dignity in dying, but these must be undertaken with the utmost sensitivity, and with the best interests of the patient and their loved ones at its core.  These conversations must never be a means of rationing care or of ticking a box in a care plan.

We are increasingly concerned to hear of incidents across the country during the COVID-19 pandemic, where patients who score above a threshold on various frailty indices have had conversations with health care workers in which the patient felt pressurised to agree to a DNAR and to give up the right to be admitted to hospital. Health care workers often feel that they are responding to official guidance and that they have no choice but to comply. This is fundamentally wrong. Health care workers must always place the interests of their patients as their main obligation and duty.

Of course not everyone will benefit from intensive procedures such as ventilation, but even the most frail may benefit from less interventionist treatment such as specialist assessment, symptom control, antibiotics or oxygen. It has been reported that the bed occupancy in some NHS facilities is lower than usual. Despite this thousands of people are dying in care homes, some of whom may have benefitted from hospital admission.

We restate our conviction that every life is of equal value. There must be no arbitrary thresholds above which treatment is withheld, and no one must feel coerced into forgoing treatment which is their right out of guilt that there are not enough NHS services to go around, especially when there is reported to be capacity in NHS hospitals.

Dr Jackie Applebee is the chair of Doctors in Unite