Category Archives: Patient Choice

Dear chums

As you may have heard the Wirral Clinical Commissioning Group (CCG) has announced that it wants to close five local NHS clinics because Wirral residents “were confused about where to get help with urgent care”. The CCG, which is the local arm of NHS England, says it wants to “move care closer to home”.

Are YOU confused? Will YOUR care be closer to home if they close centres which are used by THOUSANDS of Wirral residents every week of the year?

Eastham Clinic; Victoria Central, Wallasey; Miriam Medical Centre, Birkenhead; Parkfield Medical Centre, New Ferry; Moreton Medical Centre

All these are due to close. Will a proposed ‘urgent treatment centre’ at Arrowe Park be closer to YOUR home?

You can find a petition from Defend Our NHS here:

https://www.change.org/p/defend-our-nhs-save-our-wirral-walk-in-centres?

Please sign and share with friends.

Thanks

Kevin

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For everyone who couldn’t make the Conference, here is Alison Scouller’s ( Vice Chair ) speech. An audio file is also posted.

Jean Hardiman Smith

Hello Alison Scouller here, sorry I can’t be with you. These are my thoughts to accompany the SHA discussion document before you. We decided to write this policy as part of our wider policy work, as we had no statement of the SHA’s perspective on maternity care.
I’m a retired midwife who worked in hospital, community and latterly as a midwifery lecturer in South Wales. To devise a policy I took inspiration from the Save Liverpool Women’s Hospital campaign’s manifesto for maternity and worked initially with two Welsh members, Billie Hunter, Professor of Midwifery and Gill Boden who is a campaigner for AIMS, and another Midwifery Professor Mavis Kirkham from Sheffield as well as liaising with our secretary Jean Hardiman Smith. Since then we have revised the policy considerably, following suggestions and contributions from Central Council members.
We have taken on board the particular concerns of the Liverpool campaigners in the context of the creeping privatization of the English NHS, but in writing this policy we had to have a policy which is applicable across the UK. Therefore the first paragraph sets this out. .
We decided that the right to access contraception and abortion that should form part of another document about reproductive rights, including fertility treatment, and that here we should focus on care for pregnancy.
As you can see in point 1) we put the importance of addressing poverty centre stage, and the overarching importance of good nutrition from pre to post pregnancy, in fact throughout everyone’s life! We decided not to be too specific on particular public health measures, as our policy has to be applicable in different versions of the NHS and the wider context. We also included the issue of other forms of stress and their detrimental effect on pregnancy outcomes, both in terms of women and babies.
The next 2 points emphasize the importance of those at the centre of maternity care needing to be listened to, whether it’s about their own individual situation or in terms of general observations about how care should be. Planning for care should of course reflect diversity in all communities. In order to address inequalities in society, whilst all should receive the same level of care, extra provision should be there for some, as was recognized by previous Labour Governments in projects such as Sure Start.
We went on to identify issues related to specific stages in pregnancy itself, having covered the pre pregnancy period. In point 6) Antenatal care is clearly crucial to ensure that women are aware of as many aspects of their health as possible, such as family history, normal physiological changes of pregnancy, Body Mass Index , any pathological conditions already present or precipitated by pregnancy, and how these may impact on their pregnancy outcomes. It needs to be accessible as early in pregnancy as needed. It should be as local to women as possible and include at least one home visit, unless the woman does not wish for this, with her named midwife.
When we talk about antenatal education this does not mean in a formal, school type environment but can range from physically meeting in a group setting with a midwife to having education available on CDs, online and via social media. It’s not just about being given information for example about how labour may progress but also learning practical skills to cope with it, such as exercise and relaxation. It’s also about what happens after the birth and coping strategies for parents. The social and support aspects of women and family members meeting with others going through a similar experience are usually the most valued by those enjoying group education. Of course specific needs have to be catered for, so that some women may prefer to attend women only groups and prefer less formal settings.
The evidence for the effects of adverse childhood experiences on people’s ability to be good parents is now quite compelling, hence point 7)
In relation to point 8) We know from research and experience that women’s wishes in relation to place of birth are determined by many factors, and these are very varied. Health care professionals must strive to provide as much evidence based information to enable women and their families to make the right choices for them. All places of birth carry some risks, with home birth and stand alone birth centres there are always concerns about access to ‘back up’ in emergencies. On the other hand there are risks associated with unnecessary intervention (mistimed, inappropriate and even dangerous) in childbirth, both in terms of mortality but also morbidity of mothers and babies I think Lesley page coined the phrase ‘too much too soon, too little too late’ to summarise the problems unfortunately still occurring. The other thing to bear in mind is the importance of antenatal care and education in ensuring safe outcomes. If that care is as it should be, then women at risk of complications are less likely to have poor outcomes because care will have been tailored to mitigate those complications.
Moving on to point 9) we identify the importance of continuity of care. This can be difficult to achieve in cash strapped services but has been consistently shown in research and other feedback to be a key concern for women and promotes positive outcomes.
Finally we put in relation to after birth, points 10) and 11). Physical, emotional and mental health are equally important here. Increasing breastfeeding rates would make a huge difference to children’s health, yet initiation and continuation of breastfeeding rates in the UK remain low. Once again peer support has been shown to be critical to breastfeeding success, as well as support from midwives and health visitors.
In the past, care of women’s mental health has lacked coordination between midwives, health visitors, GPs and community mental health nurses. Equally where babies have been compromised by maternal complications before or during birth and/or being born preterm then neonatal special and intensive care cots should to be available as needed.

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For everyone who couldn’t make the Conference, here is Jessica’s speech to our Fringe meeting on the future of Women’s health that I referred to earlier in a members email.

Jean Hardiman Smith

 

Thank you for inviting me to speak to you today. My name is Jessica Ormerod. I run a research and information organisation called Public Matters with my lovely friend and colleague Deborah Harrington.
Although we write about all aspects of the NHS and other public services, I have a particular interest in maternity. I have been writing about maternity issues for seven years since I was the chair of the maternity services liaison committee for Lewisham Hospital which coincided with our fight to save our maternity services. We won that fight but we have by no means won the war because as you know maternity services up and down the country are being closed and downgraded.
But before anything else I want to paint the picture of what is happening to the NHS as a whole. Because every closed maternity ward, service or reduction in staff is the direct result of changes to the NHS that have been happening since the 2012 Health and Social Care Act. These changes are having a devastating impact on access to care. It is no exaggeration to say that we are witnessing the reversal of 70 years of universal, comprehensive and equitable care.
The 2012 Health and Social Care Act put into place all the major elements for a step change in the privatisation of the NHS.

A QUANGO called NHS England was formed as the Commissioner-in-Chief of the service, with over 200 subordinate local commissioning units. These commissioning units broke with the tradition of planning services, replacing it with buying in from public, private and voluntary sector providers. Areas of work are subdivided into contractable units and NHS public providers are obliged to compete. The loss of a contract means loss of income, which has a knock-on effect on the viability of the public sector, which is left with high cost acute care and a reduced income.

In 2014 a new CEO was appointed to run the NHS in England. He created a new plan for the NHS, the Five Year Forward View and this was greeted by the establishment as a welcome antidote to what was seen as the fragmented mess left by the 2012 Act (this was only a mere 18 months on from it being enacted). But it’s important to recognize that far from being an accident, the Act achieved the fragmentation necessary for privatisation to be embedded at an organisational level, including many major health industry players taking key roles in the commissioning and policy-making process.

At the heart of NHS England’s Five Year Forward View is the idea that the NHS in England will never again be funded to a level that maintains its services in the way they are run now. It puts together a series of proposals for change which are not just cuts but are about a fundamental reshaping of how services are provided. Expensive specialist and emergency care are relocated to centralised hubs and more care is to be delivered in the community via partnerships with local authorities. There is an aspiration for fewer emergency admissions with an improvement to overall health which it argues will lead to less dependency on NHS services.

We could say the scope of this aspiration is far reaching or we could say it is pie in the sky. It not only assumes the NHS can cope with a growing population without corresponding growth in services but that it will do so with a reduced service with much of the change becoming the responsibility of local authorities.

The process of transforming the NHS in England, is based on close co-operation between successive politicians and Department of Health managers over many years with the US Health Maintenance Organisation or Accountable Care Organization principles of managed care. This process is continuing without any checks and balances of substance within the formal organisational structures of government. Politicians go to great lengths to deny both privatisation and US influence on the current changes.

There is, however, a groundswell of resistance to the damage being done to the NHS and there is a lot of knowledge surrounding individual service contractions and closures, but little in the public domain about the overall programme of change. And that is what I am here to talk about today.

The National Maternity Review, aka Better Births – A Five Year Forward View for Maternity Care, is one of the Five Year Forward View’s New Models of Care. It emphasises community care delivered through local hubs with a theoretical reduced demand on hospital services. It recommends an increase in independent sector providers and introduces Personal Care Maternity Budgets. Personal Care Budgets commoditise and monetise the system. They add layers of unnecessary complication, increase expense, fragment accountability and lead to an accounting nightmare.
44 Local Maternity Systems have been established. The systems have been introduced without consultation, peer review, pilot studies or effective oversight from public health or parliamentary scrutiny. They are small-scale Integrated Care Systems. Unlike the Integrated Care Organisations which are now under consultation, they have been put into place with very little fanfare or institutional opposition.
As with all the changes to the NHS currently taking place, there is a real problem that rhetoric about better care closer to home is not matched by real resources or access to physical structures like hospitals. NHS England consistently refers to services being more important than organisations but fail to fill in the blanks about how this works. They also insist that travelling in order to receive excellent care is not a concern to patients. There is no acknowledgment that time, expense and severity of health condition all very much effect the distance people are able to travel regardless of the excellence of the service at the end of the journey.
In the case of maternity, these questions of distance and the emphasis on community care run two different risks. The first being the potential for increase of emergencies outside hospital setting. The second is that mothers might be taken in to hospital for assisted birth or caesarean in order to pre-empt risk arising.
But what makes maternity different from other services?
Most people use health services most at the beginning and end of their lives. Pregnant women are the exception to this. During pregnancy women come into more contact with the NHS than they probably have ever done in their lives. This is particularly the case if they have a complicated pregnancy or birth. Healthy women can become profoundly unwell during pregnancy and they can be vulnerable to life-threatening complications during birth. That’s why it is so important that women have all levels of care within easy access.
Until now maternity services have been provided in the most part by the NHS. Women have always been free to employ a private midwife. But the NHS has a duty to provide a midwife at every birth even if a private midwife is also in attendance.
Maternity services are woven through the traditional structure of the NHS. Women see their midwife at home or at their local GP. They receive a minimum of two scans to check the baby’s progress and health at the local hospital. If they have a pre-existing condition or they develop a pregnancy-related illness then their specialist will work alongside the maternity team to ensure that the woman and baby are safe and as healthy as possible throughout the pregnancy.
Currently women can give birth at home, in a ‘stand-alone’ facility run by midwives, ‘co-located midwifery unit’ – that’s a midwife-run facility on hospital grounds, or in an obstetric unit which includes doctors and surgical theatre. Obstetric units can only be sited in hospitals with A&E because they require acute services which is blood, air and surgeons. A woman can become dangerously ill very quickly during birth so timely access to acute care is essential.
Put this into the context that since 2010 maternity services have been starved of funds and there has been a staff recruitment and retention crisis. Many maternity units have already been downgraded or closed, hundreds of GP practices have also closed so women already travel further to receive care. This means it costs more and takes more time to see a midwife, GP or hospital doctor. It also means longer emergency transfer times. The risk is this will only get worse once the STPs restructuring of the NHS is complete.
Who is driving the changes to maternity?
Surprise, surprise, Better Births panel includes private health providers and those private companies are working with government to re-write policy.
Although most current providers are NHS hospitals, private providers are now being strongly encouraged. Local Maternity Systems set their own payment systems. This means that they can choose whether they pay via their geographical population or they can pay per activity or service. However, they do not follow established budget areas; they do not share boundaries with CCGs or Local Authorities even though they rely on budgets from both. Across the country there is now a mish-mash of payment systems. The risk is that women will fall through the gaps.
NHS Trusts have been ‘incentivised’ to adopt Better Births by offering a chance to win ‘pioneer funding’ to speed up the transition to the New Models of Care. In November 2016, Seven ‘early adopter’ sites started to implement the recommendations – I don’t need tell you about this because you’re part of it! The sites were told to be bold and radical. Another incentive is ‘the maternity challenge fund’ which instructs successful trusts ‘to explore innovative ways to use women’s and their partners’ feedback to improve maternity services’. A pioneer site is not the same as a pilot test site.
LMSs are encouraged to work alongside private providers in order to offer women a wider choice. As most women have previously been cared for by the NHS this simply means opening the door to the private sector. In a climate of serious staff shortages, it is possible that some midwives may see the benefit of setting up an independent midwifery practice rather than staying in the NHS. Despite protestations to the contrary, this does actually reduce the ‘NHS offer’ and opens an income stream for public money to be handed over to the private sector.
Better Births tells us it is working on a new accreditation scheme for maternity providers. But in a publicly provided NHS service, this is unnecessary because the NHS trains staff to a professional standard.
Private providers are required to have a contract with the NHS in order to receive payment via a Personal Care Budget. It is claimed that the budgets (which are described as ‘notional’) will demonstrate to CCGs the kinds of choices women make during pregnancy, birth and postnatally. This will apparently encourage CCGs to respond to women by increasing their offer. The claim is that this will also empower women. But it is decidedly unclear about how this can be achieved. The guidance talks about using Personal Care Budgets for birth pools, place of birth settings or breastfeeding support but all of this should be available to every woman regardless of a personal care budget. In fact, all of these used to be available to women as part of the normal care given by the NHS.
Moreover, it precludes the notion that women become ill in pregnancy. No one chooses to get gestational diabetes, pre-eclampsia, HELLP or any other life-threatening condition. What happens when your health needs change but you’ve used up your £3000 on hypno-birthing? There should be real concern about the potential lack of access to obstetric care when women have serious complications of pregnancy. Or to return to the issue of financial balance, if £3000 is a notional budget for a normal birth which can be used up in a number of ways then the acute hospital will potentially have to pick up the cost of the emergency care without a matching budget.
What does this all mean?
Scale and pace have taken precedence over caution and evidence. Academic research will take years to catch up to establish the public health consequences of this new policy.
This is a top-down reorganisation of a national service with little to no consultation, pilot schemes, peer review, oversight or risk assessment. A Health Select Committee inquiry into the maternity transformation plan was not completed because of the 2017 election. It has not been re-opened.
The Vice-Chair of the maternity transformation programme finishes his report with the following advice to LMSs: Be Bold! Don’t wait for instruction!
Clearly long gone are the years of epidemiological study, of public health planning, of consultation with experts.
Better Births is based on consumer choice issues around personalised maternity care. There is a serious lack of evidence that this restructuring will give women the vital services they need. There are fewer services, obstetric departments are being stretched even further and technology is replacing face-to-face clinical care.

On the other hand, it embeds private care and fee-for-service. And, most importantly of all this is not how a national public service works.

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Update 2/5/17: If you are concerned about GP records, see this post


In matters of health and care, your relationship with your doctor is based on a very human spirit of confidentiality. Not the cold law of data protection.

Any large, formal system is bound to breach the Hippocratic Oath; “First, do no harm”. Data doesn’t care. In a purely digital world, a thing either is or it isn’t – with no nuance. Smaller systems, talking to each other, offer more discretion for the humanity of your situation. It is  why fax machines still work better than e-mail for the NHS.

Patients routinely find themselves in one of the following three real-world scenarios. Human situations get ignored by the database designers’ visions, forgetting the real world::

  • When a doctor cannot tell their patient the full story without causing distress – such as when at test returns a  likely false positive result.
  • When a doctor cannot tell another doctor something – such as where  they’ve been asked not to by their patient.
  • When institutions cannot tell doctors relevant details – e.g. in situations where there is “too much data, but no clear information”.

When you are between diagnosis and treatment, which (if any) of these three apply may change hour-to-hour. Human choices are a reality, usually ignored by by those who want to copy records across a lifetime.

medConfidential defends the confidentiality you desire for your medical records.

Why is Confidentiality more than Data Protection?

“Data Protection” was a 1980s response to the advent of new computers and the copying of data. Transparency was the balance intended to ensure that processing is “fair”. When copying was limited to “faster photocopiers”, organisational boundaries were maintained, and confidentiality questions rarely engaged.

Modern communications has created the capacity to copy medical records at a scale that shatters confidentiality.

Confidentiality, and trustworthiness, is based on patients’ expectations of boundaries. And so, as data subjects, any processing that breaches duties of confidence cannot be considered Fair – so cannot be lawful.

medConfidential defends the confidentiality you desire for your medical records.

If you do have concerns, it is still safest to opt out now to exclude your data. You can always opt in later. For more information on what you can do, please visit our How to opt out page.

We also take donations.

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David Cameron notoriously claimed at the April 2014  Welsh Tory Spring Conference that Offa’s Dyke had become “the line between life and death” due to the performance of the Welsh NHS. However fortunately for the truth and honest debate, almost to the day the Nuffield Trust published its comparative study “The four health systems of the United Kingdom; how do they compare?”. It reported :- However, this latest study ….. reveals that while there are few indicators on which a devolved country does better than England or its North East region, the performance gap between England and the rest of the UK has narrowed in recent years. There is little sign that one country is moving ahead of the others consistently across the available indicators of performance.

Despite being  being caught out, the Prime Minister continued to misrepresent the state of the NHS in Wales. By October 2014, when challenged about the state of the English NHS, he demanded that “ …Let’s have an OECD inquiry … I want a comparison between the Labour NHS in Wales (and England)..” He went on to say that Labour was “ ..totally terrified of (its) .. failures in Wales on the NHS.” Indeed Monmouth Tory MP, David Davies, went so far as to suggest that the Welsh Government was doing everything it could to delay the production of such a report.

However despite all this rhetoric the report, “OECD Reviews of Health Care Quality: United Kingdom 2016”, was published in February 2016. And it concluded that from the limited country specific data available “… no consistent picture emerges of one of the United Kingdom’s four health systems performing better than the other.” In short, again, there was no evidence to support Cameron’s claims about the relative performance of the Welsh NHS.

The line between fact and fiction.
In his response to the publication of the review the Welsh Health Minister, Prof Mark Drakeford said “This report is the line between fact and fiction. Any claims of one nation having a second-rate NHS compared to others simply do not reflect the facts. The time has come for a real, mature debate about the future of our health services.” Can we expect Mr Cameron please take note?

While the OECD showed that each administration needs to improve its performance, in relation to Wales it concludes that continuously improving quality of care is deeply established and widely shared across the Welsh health system. And where things are not going well, the Review felt that the Welsh Government’s “Escalation and Integration Framework” was a robust tool for quality assurance and intervention.

These are important messages as for most of the last half decade Welsh Tories have been arguing for a total “Keogh style” review of the NHS in Wales with the implication that the NHS in Wales is in some sort of systemic melt-down similar to the situation in Mid Staffordshire NHS Foundation Trust. The OECD review shows no evidence to support this denigration of the Welsh health service.

How the planning system is working.
In stating that all of the UK shows an improving picture, there are still a number of areas where the NHS does need to do better. This applies in different measure across all of the four administrations not least in Wales.

The OECD Review reports that Wales no longer operates an internal market but uses a “planned” system underpinned by the principles of “prudent health care”. While the prudent health care principles give an important sense of direction to the Welsh NHS, the under-performance of health boards linked to an imbalance in favour of local autonomy means that there is room for improvement in planning health care delivery.

A greater sense of national purpose is needed which could be achieved by butressing the prudent health care approach with a clear action plan and by strengthening the use of the three year Integrated Medium Term Plans (IMPT).

Inequalities and primary care.
Welsh Health Boards are still adjusting and learning about their new planning role. The Review believes there is a need to give an increased emphasis to primary care as part of a wider agenda of tacking health inequalities. Both these areas have been judged to suffer from relative neglect under the new “planing” regime. This could be a consequence of the relatively weak role that the primary care sector and patients have in the planning system e.g. there are no GPs on the Health Boards by right.

Developing the role of primary care clusters (PCCs), covering populations of 50-250,000, could have a significant potential in this regard. And the latest investment by the Welsh Government in PCCs is an important step forward. The clusters will provide opportunities to broaden the range of services and expertise that patients may access in a primary care setting. In addition the clusters provide a workable population base for more sensitive health care planning where the local expertise of front-line clinicians can be usefully captured by the planning system.

Patient power.
The OECD seems to take the somewhat ideological view that the lack of a market in health care in Wales  diminishes patient choice and influence compared to English. However, in making this point, it is acceptes that the geography and demography of Wales does not allow for a ready translation of the English experience.

Faced with this lack of “patient power” it recommends a strengthening of patients’ voices. More effort should be spent on capturing the patient experience. While coming at it from a different perspective, this is in line with the SHA Cymru view that we should “ use the visible hand of public accountability to improve standards rather than rely on the invisible hand of the market”.

Wales has retained its Community Health Councils as the patients’ voice within the NHS. It has been through a number of changes to improve its effectiveness down the years thought it is still debatable that they are fully fit for purpose. The Review recognises the need for CHCs to be more effective in the way they hold the service to account and articulate the views of patients. In improving its focus on these tasks there is a question as to whether CHCs add any value to NHS quality by continuing with their on-site inspection activities.

Collaboration rather than abusive rhetoric.
The four health administrations are doing things differently across the UK. New and innovative ways of doing things are being developed. The OECD acknowledges that this diversity provides an important learning opportunity that is being neglected by all four administrations. In part the lack of an agreed set of performance parameters and a lack of professional and political will is preventing this from happening.

Rather than using these differences as a cynical party political ploy, as the Tories have been doing, this form of engagement and collaboration seems a better way for the the National Health Service across the UK.

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you choose

Perfect markets need choice. If providers collude in pricing, say because they aren’t that many of them, the consumer doesn’t get a choice, and often has to pay through the teeth to obtain the product.

For products which are the same, for example a biological detergent, the choice comes from variation in ‘adding value’ such as perfume.

A similar argument holds for paying to have your hernia done. The actual service of the actual operation is effectively the same due to constraints posed by the functional anatomy of the human body. But would you like fries with that?

In the paperwork which surrounded the Health and Social Care Act (2012), there was the proposal that choice would lead to lead to improved quality in the healthcare market.

Healthcare is not a market for a number of reasons.

Prof Michael Sandel from Harvard has framed the complicated issues in a number of ways.

In the Guardian, Decca Aitkenhead writes:

“According to the logic of the market, the matter of whether these transactions are right or wrong is literally meaningless. They simply represent efficient arrangements, incentivising desirable behaviour and “improving social utility by making underpriced goods available to those most willing to pay for them”. To Sandel, however, the two important questions we should be asking in every instance are: Is it fair to buy and sell this activity or product? And does doing so degrade it? Almost invariably, his answers are no, and yes.”

The evidence that competition in markets to do with the provision of healthcare drives up competition is weak. This was finally conceded by the previous CEO of NHS England – but there’s a change of hands at the helm in Simon Stevens, appointed by a Conservative-led government.

That choice is so pervasive in neoliberal health policy is exemplified at the lengths to which people dismiss lack of choice.

To advocate for choice at this precise moment would be utterly surreal, given for choice to operate the system needs reserve capacity. This is clearly not the case if the NHS England masterminds seek £20 billion austerity cuts.

For example, if recent allegations – that the NHS received a shortfall of £8bn in funding for the NHS thus mandating it to make three times the volume of ‘efficiency savings’ it otherwise would have had to have made – are true, can it sensibly argued that austerity brings improved choice?

It is hard to argue against the notion that poverty brings about decreased choice. Likewise, if you run out of money in your personal budget, in effect rationing at the n = 1 level, you will find it difficult to argue that your choice has improved.

Similarly, if against the wishes of many CEOs of NHS Foundation Trusts, a cheerleader for the Government imposes a contract on junior doctors, against which 98% of junior doctors have been balloted to reject, can that really be choice?

The imposition of the junior doctors’ contract is as desperate of course as the imposition of Academy status on schools. There is no evidence that this forced conversion drives up quality.

Try another one – try being locked into repayment of a PFI loan for 30 years, a type of ‘corporate wonga’, where your repayments are at eyewatering unconscionable interest rates. Who benefits from this ‘choice’ apart from the PFI money lenders?

Rather, there is quite a lot of evidence that previous UK governments have encouraged the conversion of a well funded national system over decades into a fragmented cesspit of autonomous units, increasingly being sold a pup by the private sector, with worsening performance despite staff working their butt off.

Parents can’t get their children into schools nearby; and the class sizes are ginormous. And your local A&E is shut down as the current Government says it’s ‘unsustainable’ – i.e. does not wish to afford it.

This is not choice, but an ultimate problem in the exercise of choice is that the ‘choice’ of government we have currently was done by a small proportion of the electorate. As ever then, the resultant choice is illusory, as different newsreaders take it in turns to read the script from their corporate masters.

 

 

@dr_shibley

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I went to an LCC event on resilience. The Council are encouraging people to create Resilience Plans for emergency situations like when it snows and no-one can get in and out of your street for days on end.

Makes sense. We talked in groups about who is most vulnerable in these situations. Naturally I thought about the frail, multi-morbid elderly living alone. What happens if the District Nurse you rely on for your insulin injection can’t get to you? Or if the carer who gets you up and toilets you can’t get through the snow?

I did ask if the County Council were working with Health to ensure that Resilience Planning is part of Advanced Care Planning. Of course they are. Strategically….

But without any kind of integrated record keeping of course.

The Council know, apparently, who is vulnerable in our community (….do I believe them?) but can’t share that information with community leaders until there is a crisis.

Why-o-why-o-why….

…couldn’t a persons Resilience Plan be part of their medical Advanced Care Plan and be attached to a shareable health and social care record?

Look at what they are doing in Ireland using the e-portal “Patients Know Best”.

Answer:-
Too many egos, too many silos and too many managers creating pretty websites and complex information sharing protocols that protect health and social data from the one person who has a right to share it:
You.

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With the national health services rolls expanding, patients all across the UK are experiencing longer than anticipated wait times for visits with their general practitioners (GPs).  Patients are also being cautioned to expect fewer necessary services being offered as more and more GPs reduce their offerings due to the necessary reduction of time spent per patient.  Industry experts are also anticipating a loss of quality in routine treatments as resources are maxed out in an effort to serve more patients with the same or fewer resources in staff and equipment on hand. With this news, the proactive purchase of private medical insurance has become a health wise decision, one that provides a sense of financial well being.

One clear difference between private medical insurance experience and the offerings of the public health services is a matter of choice.  The required referral of a GP who has control over whether or not you will be referred to a specialist as well as the location and facility where the treatment will be carried out.  If the idea of making the best decision for you and your health appeals, then consideration of the pros and cons of private or public healthcare should be of keen interest.

Besides choice, the matter of quality has become another significant talking point of the medical industry across the UK.  Accessibility to doctors who are well trained and at the cutting edge of their specialty in the use of the most up to date medical equipment and breakthrough treatments can significantly reduce a patient’s treatment and recovery times; meaning the loss of income due to work stoppage is reduced and the patient’s quality of life is more quickly set to rights.  Patients with private medical coverage are also less likely to be held at the mercy of the cumbersome approval process as governed by the NHS, and are more apt to be involved with decision making process regarding his or her treatment and the services deemed necessary by the doctor.  Decisions for treatment and access are granted in a matter of days, and based on the specific needs of the individual as opposed to the public health guidelines, which takes a more one-size-fits-all approach to healthcare.

In the Greater London Area, a GP referral for a heart valve operation can take anywhere from 4 to 19 weeks before fulfillment at an NHS governed facility;  this time span is in line with the 18 weeks of wait time between referral and an appointment in accordance with the public health guidelines.  With private insurance coverage, one could consider Spire Healthcare- where one can book a diagnostic appointment with a specialist for as few as 24 hours from the time of the initial inquiry.  Clearly the patient with private medical insurance coverage is able to act to his or her own advantage regarding choice of specialist, the timing of medically necessary procedures and they enjoy having a greater say in their own treatment timeline.

The Insurance Service was established with the goal of meeting the needs of clients with an interest in preserving his or her quality of life in the event of a major illness or accident and, even death.  When considering the future, protecting your family and assets against the unforeseeable is an important aspect of long-term financial health.  Don’t leave to chance the access to choices, a higher quality of care and efficiency of service when all of these things can be so easily attained.

 

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These myths were presented by Dr Nigel Speight to the SHA meeting in Stockton on 22nd November 2015

Der Speightm Debbie Abrahams and Louise Baldock

  • “We can’t afford the NHS”

Yes we can!

This myth is based on the claim that the increasing age of the population is posing an insuperable burden on the NHS. The unstated implication is that we should withdraw medical care from  the poorer members of our ageing population and allow them to die off, while the richer ones survive with private health care!

Since this is hopefully out of the question, we need to consider the best way to meet the health needs of our whole population.

The fact is that the NHS is currently one of the most cost-effective health services in the world, coming top out of 17 countries surveyed by the Commonwealth Fund. The USA’s health care system came bottom for cost-effectiveness. The English NHS achieves its high efficacy while only receiving 8% of GDP. France spends 12% of its GDP, Germany 14% and the USA 18%. The main reason these other countries fare so badly in comparison is that they have to spend so much money on administration of insurance-based systems.

  • “Health Tourism is bankrupting the System”

Not true! The government spreads this myth as a means of distracting us from the real cuts of £20bn that the NHS is facing. In reality, the best estimate of the cost of treating foreign nationals in the NHS is less than 0.2% of the NHS budget.

  • “The Government has no intention of privatising the NHS”

Oh yes it has! All the machinery is in place for a steady privatisation of the whole of the NHS. One tenth of surgeries are already privately owned, and large contracts have already been given to companies like Serco and Virgin. In the last 10 months, over 70% of contracts signed for NHS services have gone to private providers. Admittedly the majority of services are still provided by the NHS, but at this rate the NHS will be fully privatised within the next 3-5 years unless we can stop the process.

  • “Private companies deliver better and cheaper care than the NHS”

There is not a scrap of evidence to support this assertion, and plenty of evidence to the contrary. Private companies have to make a profit for their shareholders, and they do this by cutting services once they have obtained the contract. A prime example is Serco’s contract to provide emergency care in Cornwall. They failed to provide enough receptionists or doctors, and on one occasion there was only one doctor on call to deal with the whole of Cornwall. Serco was subsequently found guilty of falsifying its data to disguise these failings.

  • “The Government’s reforms are aimed at cutting bureaucracy”

On the contrary, simply implementing the “reforms” has cost an enormous amount of bureaucratic effort. One best-guess estimate is that this cost is approaching £3billion. Once in place, there has been a major expansion of bureaucracy involved in setting up new machinery for the tendering process. Before successive governments started the privatisation process, NHS administrative costs were close to 6% of the total NHS budget, and this was why the NHS was so cost-effective. These costs have subsequently spiralled. The House of Commons Health Select Committee found that simply administering the “purchaser-provider split” ( during the days of New Labour) cost c 14% of NHS funds, and the explosion of administrative activity since the bill was passed must have put the total closer to 20-25%. More money spent on administration inevitably means less money to spend on patient care. This has already resulted in hospital closures, cuts in nursing staff and bed cuts.

  • “The reforms will give patients more choice”.

This is simply untrue. Previously a patient or his/her GP could request a referral to a named specialist of the patient’s choice virtually anywhere in the country. This is now completely impossible as referrals have to follow contracts with local providers. Referrals are now processed through management centres where they are either rejected (one in eight of referrals are rejected currently) or redirected, by people often with no medical knowledge or training. A GP cannot even refer a patient directly to a named consultant in the local hospital.

  • “The reforms put GPs in charge”

No they don’t!  Initially, England’s GP’s were taken in by this promise. Gradually it dawned on them that they were being given responsibility without power, and the College of General Practitioners and the British Medical Association came out in strong opposition to the NHS Bill. Far from being in charge, polls show that 73% of GPs now feel they have been “set up” to take the blame for rationing health care.

  • “The reforms give power to local people”

Again this is simply untrue. The example of Jeremy Hunt’s attempt to  close Lewisham hospital is a prime example. He attempted to do this against the full weight of local public opinion. When the High Court ruled against him, saying that what he did was illegal, he simply changed the law so that next time he will be able to get away with it.

After all these Myths, let us not forget one barefaced lie. Before the 2010 election, David Cameron promised the country that “there will be no major re-organisation of the NHS”. In fact, the re-organisation that is taking place is so “major” that, according to Sir David Nicholson, head of NHS England, “it can be seen from outer space”. It must have been secretly planned to take place all along. While the public are well aware that politicians often tell lies, this was a major act of political deceipt of which the public should repeatedly be reminded.

CONCLUSION

 The English NHS is under attack as never before. The media have failed in their duty to inform the public, many of whom do not realise how serious the situation is. When this government came to power the NHS had its highest ever popularity ratings with the public. Since then the government has pursued its own privatisation agenda at every opportunity, and has attempted to deflect criticism on to doctors and nurses by a continual campaign of aggressive negative briefing.

We appeal to you to do all you can to hold this government to account and to defend the NHS before it is too late.

(This information sheet is an abridged version (by Dr Nigel Speight) of a paper by Dr Jacky Davies, co-chair of the NHS Consultants Association, from the March 2014 Newsletter of the NHSCA)

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Promoting patient choice at the end of life

 Labour’s health and care policy recognises that “users, their families and the public are at the heart of local health and care services”. To that end the policy stresses the importance of respecting a person’s choice of care setting at the end of life, with the ambition of making it possible for people to die at home surrounded by their family.

This is a welcome commitment; but it is important to recognise that personal control at the end of life extends beyond choice of care setting and includes choice and control over how and when we die.

Who has the Right to Choose?

 Historically policy on end-of-life care and decision making has developed in a piecemeal way. This is partly because of the ethical dimension. On some issues Government can set out policy (like dying at home) but others are issues of conscience and are for Parliament to decide (like assisted dying for the terminally ill). At times Government can get caught between the two (like the right to refuse life-sustaining treatment and the debate around the Liverpool Care Pathway).

 A failure to look holistically at patient choice at the end of life means that some significant issues remain unresolved. End-of-life care has been included as a priority in the most recent NHS Mandate, but NHS England has stated that it will not be refreshing the End of Life Care Strategy, instead publishing a set of actions and ambitions – leading the National Council for Palliative Care to express concerns that momentum will be lost in delivering improved access to end-of-life care. On the ground the Liverpool Care Pathway, following an independent review, is being phased out, but with no firm replacement in terms of national guidelines for healthcare professionals. Concerns have also been raised about the lack of a national policy on do not attempt resuscitation (DNAR) orders, and more widely a failure to promote patients’ existing rights through Advance Decisions and Lasting Powers of Attorney to refuse medical treatment in advance of a loss of capacity. And of course there is the ongoing public and parliamentary debate on assisted dying for the terminally ill, with a Private Members’ Bill tabled by Lord Falconer set to be debated shortly in the House of Lords.

Medical advances mean that thankfully many of us will now live longer, but also that many more of us will face prolonged suffering at the end of life. Patients who now rightly expect their wishes and autonomy to be respected in all other areas of healthcare will no longer accept limited choice at the end of life and/or having to watch loved ones suffer against their wishes. Acknowledging the ethical dimension in end-of-life care, there is a real need for leadership from a future Labour Government in creating the framework and making parliamentary time available to consider these issues in the round.

In short, the Labour Manifesto should provide a broader commitment to promoting patient choice at the end of life. Specifically, we hope that a future Labour Government would, in addition to promoting choice over care setting at the end of life, ensure:

Access to good quality end-of-life care across all care settings including hospitals and care homes.

  • Sufficient training in end-of-life care for relevant healthcare professionals, including good communication with patients, and clear guidance on removing or withholding life-sustaining treatment.
  • Promotion of advance care planning, and the ability for patients to set out through Advance Decisions and Lasting Powers of Attorney their treatment wishes in advance of a loss of capacity.
  • Sufficient parliamentary time to debate the issue of assisted dying for terminally ill people.
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The need to defend the NHS and its core principles is so important that it is sometimes difficult to have conversations on the left about ways people can direct their own health care alongside supportive professionals. Ideas that stray from the need for more cash and more staff (both of which I think are needed) are often vehemently dismissed as at best naïve (dupes of the right, inadvertently opening doors to privatisation) or at worst evil (deliberately seeking to smash collectivism). It sometimes seems that to dismiss any innovation, all that is needed is to use one of the dog whistle words – consumer, market, private, top up, voucher etc. It feels like everything has to be presented as very simple – good or bad, right or wrong, market or state. This is not in the interests of people who use the NHS, and especially people with long term conditions. They need the left to be focussing strongly on how to maintain the core principles and elements of the NHS in ways which increasingly accept people as experts in themselves.

We sometimes seem to need a dilemma-free understanding of public services, where the interests of people who run them are seen as identical to those who use them. We can agree on the dangers of the uncaring market, but little attention is paid to the limitations that a bureaucratic state can place on users of public services.  We seem to want to put our head in the sand and ignore, for example the kind of findings reported recently by the Institute for Public Policy Research:

A 2010 Commonwealth Fund report compared seven developed-world healthcare systems and ranked the NHS top for effective care and efficiency, but bottom for patient centred care (Davis et al 2010). While this may matter less to those seeking one-off treatment for an acute health issue, it has a significant impact on people who have lifelong conditions that cannot be cured but only managed”.

My gentle plea is for us to have a better debate on the left, based on the need to focus first on the interests of people who use the health service and our understanding that power matters and needs to be shared. The Spirit of ’45 made me proud of our country – watching the NHS launched by Bevan at the hospital where my youngest was born. My parents were the first generation to benefit from the NHS and in later years were also employed by it – mum as a pharmacy stores manager and dad as a driver. I was also proud when my wife became a district nurse.

Personal Health Budgets

Practical examples showing how the NHS can work together with people with personal health budgets and their families

But in the final months of my mum’s life last year, our family saw both the best of the NHS and things that need to change – like a microcosm of the national strategic challenge. We saw fantastic GP support, great specialist cancer services and unbelievably supportive hospice care. We also saw insufficient community support (not enough district nursing and too few hours of home support via continuing health care). But this was not just an issue of insufficient resources in the wrong places, there were also problems related to a lack of shared decision making. My mum felt too powerless in the face of decisions made by systems that professionals felt they had to go along with and managers enacted.

Mum’s ability to control her support was first challenged when she qualified for fast track continuing health care at home. The professionals involved directly contracted with an agency (unknown to us) which phoned to say they were coming round that night. This despite mum (with family help) having already chosen an agency, met the staff and designed how she would be supported (who and how many people, when they would come, what they would do). Though this agency cost no more than the contracted one my mum’s decision to choose and direct her own care was seen as strange and it took quite a lot of negotiation to get agreement to keep the agency she selected.

A bigger issue arose as mum’s condition worsened. She had always been very clear that her worst nightmare was to die in a nursing home. Her view was that nursing homes were too institutional in how they operate and she wanted to be at home amongst family, friends and the familiar – be able to decide who came into her house, when and how they should support her.  However, after she was admitted to the local hospice for some symptom relief, a move to a nursing home is exactly what would have happened if me and my sister hadn’t intervened forcefully. The senior consultant and other professionals felt it was best – partly given what they saw as the risks of her being at home but more importantly because this was what always happened. The PCT clearly had contracts with nursing homes and if you needed something different from three, one hour visits a day at home and a couple of nights, that is where you went. There was an attitude of “what is your mum’s problem with nursing homes” rather than an acceptance that she just didn’t want to go to one for her last days. It felt like most of the professionals were a little trapped in a “this is how we do things and how it has to be” culture. To their credit, after a lot of discussion the professional group listened to our ideas and agreed to a plan to get mum home and avoid nursing home. This was when we hit the final hurdle – the assessment disappeared into the vacuum of the PCT and never came out. Three weeks later mum died in the hospice.

I am not for a moment saying my mum’s care was poor – in the main it wasn’t. I’m not saying the professionals weren’t skilled and caring – they were. What I am saying is that she and those closest to her needed to be heard and responded to much more and that the problems with how the system worked weren’t just about the quantum of resource available.

There have been positive developments in recent years which give some people more of a say in their health care – self-management and shared decision making approaches . They have far to go before they are standard practice but are important elements of a continuum through which those who commission and provide health care can share decisions or “co-produce” (in the current jargon) with people using public services. For some, however, they won’t be enough. That is why we need to have, at the end of the continuum and for some people who choose it, the right to direct the resources for your care via personal health budgets.

If my mum had been able to say “I want the resources available to me to be used in ways that I decide will work for me, though I am happy to hear your advice about managing risk and accept skilled professional support”, I am pretty confident she would have died where she wanted, at home. I have now met many people who love the NHS and would go to the barricades to defend its key principles who have found that using personal health budgets has allowed them or their loved ones to make their health support work for them when it wasn’t working before.

There are many arguments and understandable concerns about any system that monetarises care. Some of these are practical and technical – “how do you do this stuff?” Some of them are ideological and political – “is this opening the door to top-ups and insurance?”.  All of these deserve debate – there are few powerful innovations without risks and potential downsides. It will be vital that personal health budgets are done well, that there are boundaries around the parts of the NHS they apply to, that they are not used as a trojan horse for the “selling off” of the NHS. But people on the left should engage in these debates seriously. We should consider how real and enduring problems in how people with mental health needs and other long term conditions are currently served might be positively impacted upon by personal health budgets.

Currently there is too much angry polemic, sometimes almost contempt for those (including “patients”) who are advocating for personal health budgets. Their detailed stories of how personal budgets have allowed them to have greater control over their care and improve outcomes are too easily dismissed as anecdotes rather than “data with soul”.  When people do look at research evidence they seem to be looking for cold fusion – a perfect, dilemma-free innovation  – or they point to the things that the research hasn’t yet found out as the key reasons PHBs are a bad idea. It is not helpful to dismiss a three-year independent academic trial with a control group as worthless evidence as some have done. It sheds heat not light to use the somewhat flawed experiment in the Netherlands – where personal budgets were so popular that the system buckled – as proof that PHBs are a bad idea. It is certainly a strange argument on the left to say in effect “too many people wanted to control their care – we musn’t allow that to happen here”. We might as well have said in 1948 “too many people are getting their eyes checked and teeth fixed – stop it now!”

I want to see an NHS that is properly funded and offers great health care. I also want to see an NHS that increasingly acknowledges that people and families are experts in themselves and should have a much stronger say over their care if they want that. Money on its own won’t solve this. It is really instructive that many disabled people are very anxious about proposals to integrate health and social care within a health-led system. They fought in social care for the social model of disability (a battle far from won) and fear the return of the medical model into their support.  People like the idea of joined up support very much, but not the idea of integration being done to them via systems and practices they have no real influence over. Disabled people fought a decade’s long campaign for direct payments because they knew that however well intentioned, the interests of the system and the professionals staffing it are not simply identical to their own. They knew that in some cases they needed the power to be able to say “I know you think that is best for me and I respect your professional judgement but I also need to be heard and want the resources for my care spent in ways agreed with me”.

Often people sympathetic to these arguments but wary of making resources directly available say “It’s true we need to be more person centred but we don’t need personal budgets for that, it’s about  culture change and using some of the new approaches and practices”. I hope that we can continue to make culture shifts and adopt new power-sharing methods.  At the end of the day though for some people to be heard and while we are waiting for these culture changes (its taking a while), some will want and should have the option to use personal budgets to direct the resources for their care. I respect that others on the left have different views but let’s talk about it. As Mrs Merton wouldn’t have said, “let’s have a slightly less heated debate.”

(The views in this blog are my personal opinions and should not be taken to represent those of my employer)

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Post Winterbourne View accountability and scrutiny will become even more important.

I have attached links to a short article and a longer Case Study I’ve written looking at how resident scrutiny panels can drive improvement in housing and care for residents.

This shows how a housing association providing housing and care services worked with their Resident Scrutiny Panel to look at care and housing services – new for housing! But it is new for care services too?

Phil Morgan

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