Category Archives: Rationing treatment

Imagine the scenario. A 60 year old lady (she could be a relative of yours) undergoes a routine angioplasty for stable single vessel coronary disease. Unfortunately, shortly following the deployment of the stent into her 90% stenosis of her right coronary a dissection occurs, she suffers an acute myocardial infarction, and dies. She had signed a consent form prior to the procedure indicating that there was a 1% risk of heart attack, stroke or death but she had not been told that having a stent would not prevent a heart attack or prolong her life.  She had previously told her son that she didn’t want to have a heart attack implying that’s why she agreed to the have it done in the first place. Should the Cardiologist, who knew that the procedure would not provide any benefit for what mattered most the patient, and neglected to tell her, be prosecuted? Consent that is not fully informed is not consent at all. But rather than the exception such sequestering of patient important information is very much the norm.

One study revealed that 88% of patients believed they were having the procedure done for the very purpose of preventing a heart attack and 43% of cardiologists when anonymously asked said they would still go ahead and do the procedure even if they knew it would not benefit the patient. Monetary factors, enjoyment of performing the procedure and pressure to keep up numbers of cases for individual cardiologists and hospitals all contribute to overuse. But this is not in keeping with the practice of Evidence Based Medicine which is defined by the integration of individual clinical expertise, best available evidence and most importantly patient preferences and values.

When patient’s were explicitly told lack of prognostic benefit from angioplasty only 45.7% opted for the procedure versus 69.4% who were not explicitly given this information. It is estimated that such information given to patients with subsequent reduction in procedures could save US healthcare $864 million a year.

The Academy of Medical Royal Colleges state that doctors have an ethical responsibility to reduce waste because In a system with finite resources one doctors waste is another patients delay. In the UK approximately a third of coronary angioplasties, 30,000 a year are carried out for stable disease. For many this may be to alleviate symptoms which have not settled with medical therapy but studies suggest this benefit disappears after a year and the recent ORBITA trial suggests stenting offers no improvement in exercise capacity in patients with single vessel disease.

But “too much angioplasty” is just one symptom of a system failure where financial incentives trump patients at every level.

In the US it’s estimated that 20-50% of over $3 trillion dollars spent is inappropriate, wasting resources and/or harming patients.  In the UK Sir Bruce Keogh has suggested 1 in 7 of all medical and surgical treatments in the NHS should not have been carried out on patients.  The Academy of Medical Royal Colleges calculated that at least £2 billion is being wasted on treatments that have clear evidence of no benefit.  But this is likely a gross underestimate of billions more that could be saved/money that could be made better use of if patient preferences and values are taken into consideration.

A pioneering independent free website theNNT.com evaluates evidence based medicine with quick easy to read summaries according to patient important outcomes. It recently published a review that there was no mortality benefit in taking statins for those with a less than 20% risk of developing cardiovascular disease in the next ten years. This risk profile represents the majority of at least 40 million taking statins worldwide but how many of them are aware of this? My own anecdotal twitter survey of 144 respondents revealed 92% would not take a statin on this information. Greater transparency when communicating true benefits and harms of any treatment is an easy win to rapidly improve value in the NHS whilst simultaneously empowering patients with more choice.

Improving the system will also require commissioners to financially reward doctors for carrying out a simple shared decision-making conversation with patients, not on the volume of operations or prescription of more medication which is ethically dubious at best. Every patient should also be empowered by asking the following questions as per the Academy of Medical Royal Colleges Choosing wisely campaign. Do I really need this test, medication or procedure? What are the risks? Are there simpler safer options? What happens if I do nothing?

The system is broken and can be rapidly fixed not by pouring in more money but by adhering to the principles of practising evidence based medicine where patient preferences truly matter.

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The National Audit Office (NAO) investigation into NHS continuing healthcare funding published on 5 July 2017 shines a light on the largely hidden and little-known operation of this area of long-term care. Amidst all the brouhaha around paying for care that surfaced during the general election campaign, mention of continuing healthcare was conspicuously absent, yet the interface between health and care is never sharper than where the two systems collide around long-term care.

Continuing healthcare (CHC) refers to a package of care that is arranged and fully funded by the NHS for people with significant, complex ongoing healthcare needs. As the NAO remarks, funding for such care “is a complex and highly sensitive area, which can affect some of the most vulnerable people in society and those that care for them.”

Concerns about the operation, and inconsistencies, of CHC have been in evidence a considerable time. In a review I was commissioned to undertake for the Department of Health in 2004 I drew attention to ongoing problems that would still exist if national eligibility criteria were to be introduced (as they later were), not least because of the uncertainty about the boundary between health and social care that legal judgments had failed to resolve. The NHS Ombudsman has repeatedly revisited the issue of continuing care and drawn attention to the inconsistent and incorrect determination of eligibility for CHC in individual cases. The latest report from the NAO indicates that many of the familiar and long-standing criticisms of CHC eligibility continue to hold sway.

The issues around CHC are complex but the key considerations include the following:

  • It’s a lottery: the numbers of people eligible for CHC vary widely from 28 to 356 people per 50,000 population. This variation cannot be explained by demographic factors and “suggests that there may be differences in the way CCGs and local authorities are interpreting the national framework.”
  • A lot of people are assessed for CHC but relatively few are deemed eligible. NHS England estimates that 18% of initial screenings and 29% of people referred for full assessment are assessed as eligible for CHC.
  • Other than the existence of a national framework there are few processes for ensuring consistency of eligibility decision-making either within or between CCGs.
  • Delays in completing assessments and determinations of eligibility are common. The national framework states that eligibility should normally be determined within 28 days, but the NAO reports that about one third of full assessments took longer to complete in 2015-16 (with 10% of CCGs indicating that assessments took longer than 100 days). The knock-on effects of these timescales to delayed discharges (transfers of care) are obvious.
  • The outcome of an assessment has major cost implications for patients and their families, local authorities, and clinical commissioning groups (CCGs). For people who are not deemed eligible, the costs of care will be transferred mainly to the social care system, and for people assessed as needing to pay some or all of those costs, these lie where they fall.
  • Despite large numbers of people failing to meet eligibility criteria, CCGs face significant costs as they are legally obliged to pay the full costs of those who are eligible (estimated at 4% of all CCG expenditure). Nonetheless, CCGs are being required by NHS England to make £855 million in savings on CHC and NHS-funded nursing care by 2020-21.
  • It is not known how many people appeal against unsuccessful CHC funding decisions. Although there are mechanisms for appeal, there is no central data collected on how these are used.  It is known that cases that are reviewed can lead to different decisions. In 2003/04 the lack of consistency of eligibility decisions between Strategic Health Authorities (prior to national eligibility being introduced) led to a requirement for review and widespread restitution which refunded the costs of care when incorrect eligibility decisions had been made.

Eligibility for CHC is not about diagnosis (it does not, for example, cover everyone with dementia, or everyone with MS or Parkinson’s). It is about someone’s specific needs for healthcare, and particularly involves clinical judgements about the nature, intensity, complexity, and unpredictability of need. All of these dimensions are difficult to assess, complex to understand, and inevitably contain a highly subjective component. In any nursing home, people who are paying for their own care, who are funded through the local authority, or who are fully funded by the NHS, are often indistinguishable from one another in any common sense or lay understanding. It is little wonder that CHC is seen as unfair, arbitrary, and illogical – particularly by those people and their families who cannot understand why they do not fit eligibility criteria.

A great amount of resources and staff time are committed to undertaking assessments for CHC, and – in effect – policing the boundary between care and health. Given the significance of eligibility decisions, it is important that the question of eligibility is considered wherever relevant. The fact that large numbers of assessments are undertaken and find people ineligible is not necessarily an argument for fewer assessments, but for critical appraisal of why so few make it through the assessment, and why this is subject to so much variation. When patients are being considered for discharge from hospital, the first question in the discharge process is supposed to ask whether the person has been considered for CHC eligibility.  This is an important check and safeguard that was intended to ensure that people’s needs were properly assessed before major decisions about their care were made.

The NAO findings add to evidence built up over the last two decades and point once again to the anomalous, irregular, inconsistent, and often baffling operation of CHC eligibility determination, which is reflective of the wider fault line between two separate but parallel systems of eligibility and funding for health and care, and cannot be resolved in isolation from it. Any debate about the funding of long-term care, including the forthcoming promised Green Paper, will need to address this central dichotomy.

First published on the British Politics and Policy blog

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An announcement by Justine Greening, Minister for Women and Equalities, on 29 June indicated that Northern Irish women will no longer have to pay to access terminations in England. Motivated by the proposed amendment of backbench Labour MP, Stella Creasy, the government avoided a vote in the Commons on the issue and declared instead that they will pay for Northern Irish women who travel to mainland UK for abortions.

Such an announcement is to be welcomed. Northern Ireland was never covered by the 1967 Abortion Act which allows for terminations in England, Scotland and Wales. Although there has been a Marie Stopes clinic in Belfast since late 2012, it operates within an incredibly restricted legal framework which only allows for abortion in cases where there is a long-term risk to the woman’s health. As such, around 1000 women travel to England every year to access terminations. Depending on their personal circumstances, such a procedure can cost between a few hundred to a few thousand pounds. This ruling will therefore substantially diminish the financial impact that Northern Irish women seeking terminations face.

Abortion is politicised in Northern Ireland in a manner that does not compare to the rest of the United Kingdom. Protests continue to occur regularly outside the Marie Stopes clinic in central Belfast and Northern Irish politicians openly espouse anti-abortion sentiment that would rarely be heard in Westminster. Whilst there has been a steady drip of legislative action encouraging change (in late 2015 a high court judge in Belfast ruled that the legal situation in the province regarding abortions contravenes human rights law), on 29 June 2017 the Court of Appeal in Belfast ruled against the 2015 judgement. It argued again that this area was for the devolved Assembly to rule on, and could not be changed by the courts.

Earlier in June 2017, in relation to the case of a 15-year-old girl who had travelled to England for treatment, the Supreme Court in London ruled that women in Northern Ireland were not entitled to free abortion treatment on the NHS. Creasy’s amendment emerged in response to this. In the light of these judgements, her actions in the Commons and the declaration by the government take on even more importance. The legal system appears to have been exhausted as an avenue for change, so political action on this is to be welcomed.

Such action has been seen before, but has, until now, been unsuccessful. In 2008, Diane Abbott MP fronted a similar amendment to the one that Creasy argued for, proposing that the 1967 Abortion Act be extended to Northern Ireland. Then, however, the Labour-led government of the day aligned with the argument made by Northern Irish MPs (and courts, in both judgements referenced above), that this matter was entirely devolved and should be left to the attention of the Assembly.

Whilst it is true that abortion law has been devolved to Northern Ireland since 2010, national Parliament at Westminster could have made the decision that it made this June at any point since 1967. In light of the negative attention that the Conservative-DUP deal has received due to the very conservative beliefs of the DUP regarding abortion and LGBT issues, it is hard not to see the recent decision as damage limitation. Accused of making deals with a party which appears to espouse ideas antithetical to the majority of British voters, the Conservative government can now hold up this funding announcement as a way to both distance themselves from the DUP’s social conservatism and illustrate their own liberal values.

This move also illustrates once again the weakness of the current government. Creasy’s amendment looked set to pass easily, with substantial support from Conservative members. Will there be more backbench opposition challenges like this? It would appear likely, especially in light of a fractured Conservative party, reeling from the poor General Election result.

The government’s recent announcement does nothing to change the legal situation regarding abortion in Northern Ireland. Abortion will remain illegal (including in cases of rape, incest and fatal foetal abnormalities) except in extreme physical or mental circumstances. And although it now appears that Northern Irish women will not have to pay for the terminations they seek in England, they will still face substantial costs in terms of travel and accommodation.

In addition, this decision does not remove the more fundamental injustice of this situation. Women will still have to travel, leaving family and support networks behind. Women with complicated citizenship statuses, caring responsibilities or those in abusive relationships may find it impossible to travel at all. The decision by the government is to be welcomed, but it does not place Northern Irish women on an equal footing with their English, Scottish and Welsh counterparts. They still deserve better.

This first appeared on the British Politics and Policy blog

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NHS prescribing of gluten-free foods
Many thanks Alex (Scott-Samuel) for sending me this.  I have a severe form of coeliac disease, and  my husband also has to follow a gluten free diet. He does so due to the risk of cross contamination, as if I have a coeliac attack it triggers an Addison’s crisis which is a certain visit to A&E and can be fatal.  I have to be very careful indeed, and am an A&E frequent flyer.  Our food bills have tripled and all meals have to be prepared from scratch.  Wheat is added to almost everything, and when it isn’t the item is expensive.  Even “good” meat or chicken is not  suitable if prepared in a factory where they are also making nuggets, or sausages, and porridge isn’t gluten free unless stated.  The extra expense is for dedicated factories. A tiny third of a loaf is around £3 to £4.00. Put that with a tin of beans (only Heinz is currently gluten free that I know of) and even a lunch of beans on toast becomes expensive.   I have been told that the poorer and elderly with coeliac disease are suffering already in my area, though the CCG have said that doctors can use discretion rather than issuing a blanket ban.  I have not followed up on  that to see if it is working as it should. Now imagine someone with coeliac who has been sanctioned, or is on a zero hours contract.  Food banks, at least locally, do not take such medical needs into consideration. This will certainly widen health inequalities and shorten the lives of  poorer, and even not so poor coeliacs. There are not that many of us (see below) and there is plenty of room for negotiating on price. The arguments against  are very much along the lines of Marie Antoinette’s response to the poor having no bread and starving “let them eat cake”.

NHS SUPPORT FOR PATIENTS WITH COELIAC DISEASE

About Coeliac UK

Coeliac UK is the national charity for people with coeliac disease and dermatitis herpetiformis (DH), for nearly 50 years we’ve been improving the lives of people living without gluten through providing independent and expert information, and campaigning on their behalf for better diagnosis for coeliac disease, better care and better access to gluten free food in and out of the home.

As the only charity in the UK offering comprehensive support for coeliac disease and the gluten free diet, we are a trusted voice, advocate and partner for our community.

Summary of main points

  1. Coeliac disease is a serious medical condition where the body’s immune system attacks its own tissues when gluten is eaten. Currently, the only medical treatment for coeliac disease is strict adherence to a gluten-free diet for life.
  2. Since the late 1960s staple gluten free food has been prescribed to support dietary adherence for the prevention of long term health complications and comorbidities. This rationale is now being challenged by some Clinical Commissioning Group (CCGs) in NHS England. The reason cited is, almost universally, the need for CCGs to make savings to their prescribing budgets.
  3. A significant proportion of CCGs in England are now choosing to restrict or to remove this support for patients with coeliac disease. This is leading to significant and unwarranted variation in access to gluten free food across the country and is exacerbating health inequalities, as changes disproportionately impact the most vulnerable. NHS patients across England are now subject to a postcode lottery for NHS support once diagnosed with coeliac disease. NHS patients in Scotland, Wales and Northern Ireland continue to receive full support in the treatment of their condition.
  4. CCGs report that the price paid for products by the NHS is higher than that paid in supermarkets, yet there has been no effort to improve procurement processes, including product price negotiations.
  5. The annual Net Ingredient Cost (NIC) of gluten-free foods to NHS England was around £25.7m in 2015, or around 0.3% of the total prescribing budget for NHS England of £9.3bn.
  6. Failure to treat coeliac disease or to follow a strict gluten free diet can lead to health complications and comorbidities. This means that restricting treatment is likely to be a false economy for the NHS, as it could lead to higher treatment costs and poorer health outcomes in the long term.
  7. Recent organisational and structural changes to the NHS in England has meant that innovation or the adoption of alternative forms of support, such as pharmacy-led gluten free prescribing or voucher schemes, has been hindered. Significant efficiency savings could also be made through improved procurement, but these innovations are unlikely to be cost effective at individual CCG level.

Coeliac disease and associated long-term health complications

Coeliac disease is a serious medical condition where the body’s immune system attacks its own tissues when gluten is eaten. This causes damage to the lining of the gut and means the body cannot properly absorb nutrients from food. It is not an allergy or simple food intolerance.

Coeliac disease is an autoimmune disease that occurs in people who have the genes that predispose them to the condition. It is more common among people with other autoimmune diseases, such as Type 1 diabetes and autoimmune thyroid disease.

The long term health complications associated with untreated coeliac disease are osteoporosis, ulcerative jejunitis, intestinal malignancy, functional hyposplenism, vitamin D deficiency and iron deficiency. Currently, the only medical treatment for coeliac disease is strict adherence to a gluten free diet for life.

Background to the prescribing of gluten free staple foods

Since the late 1960s gluten free food has been prescribed to support the treatment for patients with coeliac disease. Gluten-free food is prescribed to promote dietary adherence, and thus to prevent long term health complications and comorbidities. NHS support is available to those with coeliac disease in recognition of the highly restrictive nature of the diet, the high price of gluten-free substitute foods, and the very limited choice and availability of many gluten free staple foods.

To assist clinicians and commissioners to support patients with coeliac disease, National Prescribing Guidelines for the Prescribing of Gluten-free Food have been produced by Coeliac UK, in consultation with the NHS and other professional healthcare bodies. These Guidelines are endorsed by the Primary Care Society for Gastroenterology (PCSG) and the British Dietetic Association (BDA); they are followed in Scotland, Wales, Northern Ireland and around half of the CCGs in England.1

Only gluten free products that are approved by the Advisory Committee on Borderline Substances (ACBS) and appear on Part XV of the Drug Tariff can be prescribed by GP. Products are listed on Part XV of the Drug Tariff following ACBS approval of an application by producers. The ACBS list current includes hundreds of gluten free substitute products, prices are provided by producers at the time of application and subject to annual inflation increases.

In the past, NHS policy has rightly recognised that the costs associated with the treatment of long term health complications are likely to dwarf the costs associated with prescribing gluten free staple foods, dietetic advice and monitoring. However, in some areas in England, local policies are changing to either remove, reduce or restrict this support.

The challenge on price and availability

The rationale for supporting patients with coeliac disease with prescriptions for gluten free food is now being challenged by some Clinical Commissioning Groups (CCGs). Several CCGs have highlighted improvements in access and affordability of staple gluten free foods, but have not properly researched the situation within their area of responsibility, nor presented evidence in support of these claims.

Coeliac UK has asked through Freedom of Information (FOI) requests for details of the evidence used to drive policy change in affected areas. An example of the kind of research being conducted can be found in the FOI response from North East Essex CCG, where sweeping assumptions seem to have been made devoid of any systematic research, they state:

“We appreciate that there is a large cost-differential between supermarket value brands and GF [gluten-free], but many people within the CCG buy their bread from bakers or do not buy the supermarket value brands and the cost differential is therefore much reduced.” 

This type of anecdotal evidence, which is being used by CCGs to justify decisions about patient care, is in conflict with peer reviewed research published as recently as September 2015. A study in the Cost and availability of gluten-free food in the UK: in store and online by Burden, M., et al., concluded:

“There is good availability of GF [gluten free] food in regular and quality supermarkets as well as online, but it remains significantly more expensive. Budget supermarkets which tend to be frequented by patients from lower socioeconomic classes stocked no GF foods. This poor availably and added cost is likely to impact on adherence in deprived groups.” ii

NICE recommendations and duties to reduce health inequalities

The National Health Service Act 2006 as amended by the Health and Social Care Act 2012 includes duties on the Secretary of State, the NHS England Board and CCGs to have regard for NICE quality standards. There are also legislative duties requiring CCGs to reduce inequalities with respect to access to patient services and health outcomes.

The first NICE quality standard for coeliac disease was published on 19 October (QS134) and includes a statement on the need to discuss the gluten free diet with a healthcare professional, with specialist knowledge, once diagnosed. This statement from NICE includes guidance on the equality and diversity considerations for healthcare professionals, which recognises the higher cost and limited availability of gluten free food. NICE highlights the difficulties faced by patients on low incomes or with limited mobility, and because there is a genetic component to coeliac disease, NICE also highlights the strain on household budgets where there is more than one person in the family diagnosed. NICE asks healthcare professionals to advise patients on the availability of gluten free food on prescription.

However, the lack of explicit recommendations on the need to provide access to gluten free staple food on prescription has led to CCGs in England to implement local policy change in this area, and a significant proportion are now choosing to restrict or remove all prescribing support for patients with coeliac disease.iii This removal of support is leading to significant and unwarranted variation in care across the country, and as noted above, is likely to further exacerbate health inequalities.

NICE Guidance (NG20) was reviewed in 2015, and recommends that all patients with diagnosed coeliac disease are offered an “annual review”, which should include measurement of height and weight and a review of symptoms, as well as consideration of the need for specialist dietetic or nutritional advice, or clinical referral. Implementing and establishing the NICE recommendation on annual review within local services will be imperative to enable the monitoring of patient outcomes and assess the impact resulting from local policy change.

The lack of a national prescribing policy from NHS England means considerable uncertainty for those who rely on access to gluten free staples on prescription to manage coeliac disease, and the most vulnerable are most acutely affected. In particular, those on fixed incomes or benefits who receive prescriptions free of charge, and those who are housebound and rely on deliveries from community pharmacies. The result is that NHS patients across England are now subject to a postcode lottery for NHS care and support, once diagnosed with coeliac disease.

NHS costs and procurement

The annual cost of gluten free food on prescription to NHS England was £25.7m in 2015, this was 0.3% of the total prescribing budget of £9.3bn for 2015. iv,v The main argument used for restrictions or service cancellation is the need for efficiency savings. NHS support for patients with coeliac disease is quickly becoming a “Cinderella” service.

CCGs that are restricting or preventing access to gluten-free food on prescription often argue that gluten free food is now available to purchase in large supermarkets, and that patients can do this at a lower cost than the cost to the NHS to buy gluten free staples. For example, in a letter to patients dated 16 June 2015, the North Norfolk CCG stated:

“Today these products are widely available from all supermarkets and are sold to the public at prices that are considerably lower than the NHS is charged when bought for use on prescription.”

What is surprising about this statement is that prescription services seem to be now be risk because NHS procurement teams have been unable to secure competitive prices. As stated above, the price the NHS is charged for gluten free food products are advised by producers when applying to the ACBS for product listing on Part XV of the Drug Tariff.

The total UK market value of gluten-free foods in 2015 in England was £247m, making the NHS England annual spend of circa £25.7m on gluten-free food around 10% of the total gluten-free food market. vi It would be reasonable to expect that such a significant market share provides sufficient purchasing power to negotiate prices equal to those paid by commercial retailers. Patients should not be suffering the consequences of inefficiencies within procurement systems. Pressing this point, Kevan Jones MP said during the Westminster Hall debate (November 2016):

“I do not know why the NHS cannot negotiate contracts with some commercial companies. Failure in procurement will clearly have an impact.” (Hansard Online, Volume 616)

The “patients can buy products at a lower price” position also ignores the additional benefits of appropriate support and monitoring by healthcare professionals, and the fact that this is true of a range of treatment and medicines available on the NHS. The annual cost of gluten free food staples to the NHS is significantly lower than the annual cost of other items prescribed, but available for purchase over the counter at a lower cost than that to the NHS, such as Senna (for occasional constipation) with a total cost of £32.3m and paracetamol at an annual cost of £85.1m and rising.

More importantly, this argument contradicts the principles that guide the NHS, in particular that the NHS: provides a comprehensive service, available to all; that access to NHS services is based on clinical need, not an individual’s ability to pay; and that the NHS aspires to put patients at the heart of everything it does.

Gluten free food producers

While some CCGs are not always comparing like for like products when making price assessments, there are circumstances when the NHS does pay a higher price than the retail product equivalent. Coeliac UK has approached the trade association representing gluten free food producers in the UK, the British Specialist Nutrition Association Ltd. (BSNA) to challenge them on this issue.

BSNA has reported several issues relating to increase costs, including the need to provide a universal service to all pharmacies across the country, ensuring “availability and access to a reasonable supply of staple gluten-free foods”. The use of community pharmacies ensures that all patients, regardless of where they live can access staple food when needed, including those who rely on home deliveries.

Is cutting gluten free prescribing a false economy?

The NHS is also guided by the principle of commitment to providing the best value for taxpayers’ money and the most effective, fair and sustainable use of finite resources. This raises the issue of false economy, where small savings in prescription costs could lead to higher treatment costs associated with poor health outcomes and increased health complications. For example, the cost of gluten free staple food over a 40-year period is approximately £7,770 (£194.24 per year) and the cost of treatment for a hip fracture £12,170 (increasing by £70,000 per patient if cases become more complex).vii,viii,ix

Reducing dietary adherence, risks not only long term health complications, but is also likely to increase absences from work due to continuing ill health amongst patients who aren’t able to source or afford gluten-free foods.

This issue was raised by Liz McInnis MP, commenting during the Westminster Hall debate on 1 November, she said:

“Is the Minister aware that the annual cost per diagnosed patient of prescribing gluten-free food is £180 per year? Weight that up against the cost of avoiding infertility, bowel cancer and osteoporosis. What is the obvious conclusion for any NHS professional?” (Hansard Online, Volume 616)

The case for continued gluten free prescribing

Coeliac UK believes that it is important that gluten-free prescribing continues for the following reasons:

  1. Treatment and prevention of serious long-term health complications

Adherence to the gluten free diet is greatly improved through prescriptions for gluten free staples and regular follow-up and support. x Once treated with the gluten free diet for three to five years, the risk of developing the cancers associated with coeliac disease reduces to no greater than that of the general population.xi The risks associated with osteoporosis are largely dependent on any damage already sustained, or lack of dietary adherence, due to the inability to absorb calcium.

  1. Price

Gluten-free foods can cost around three to four times as much as their gluten containing equivalent. For example, gram for gram gluten-free bread costs up to six times that of standard bread. xii Therefore, the withdrawal of treatment impacts most significantly on those with the low or fixed incomes or those who currently receive prescriptions free of charge.

  1. Access

Gluten-free or “Free From” products tend to only be available in larger supermarkets or health food stores. The former are often out of town, and increasingly supermarkets are opting for convenience sized stores in large cities and urban centres; these stores often cannot justify the shelf space for these low turnover items. Those who rely on community pharmacy deliveries or without access to a car or the internet often have difficulties in sourcing staple foods. It has also been suggested that online ordering is a solution. However, the delivery costs and minimum order restrictions can be prohibitive for some, and because these products lack structure (due to the absence of gluten) they do not always “travel well” through parcel services.

  1. Availability

While many of us are used to the convenience of prepared or take away foods, availability of gluten-free products in these categories are extremely limited. This means that those with coeliac disease often need to make meals at home to take to work or on journeys, and therefore, need to have a range of gluten free staple foods, like bread, available at home.

The financial pressures faced by the NHS are well reported. However, service provision should be driven by clinical need and not adjusted purely on budgetary constraint. The need for NHS England to provide value for money when deciding on appropriate clinical treatment and services is recognised. However, some CCGs are now taking a short term view on health spending. This flies in the face of preventative strategies favoured by NHS England and Public Health England, and has the potential to derail this long-term sustainable spending strategy.

Innovating for efficiencies

Cutting and reducing service provision is not the only way to find efficiencies in the NHS. Service innovation, improved procurement and national collaboration also have the potential to deliver efficiencies, as well as improvements in patient experience.

Some CCGs have attempted to improve or innovate support services for patients with coeliac disease, while also looking for savings. The NHS Five Year Plan outlines use of pharmacy services to extend existing primary care resource, but there are significant hurdles in developing sustainable pharmacy-led service models using NHS England organisational and contractual arrangements.

These hurdles appear to have been cleared by NHS Scotland, through the introduction of a national pharmacy-led scheme, which allows for a patient-centred approach which improves the quality of the service while providing for greater control of costs. One of the main benefits delivered by the Gluten Free Food Service (GFFS) in Scotland is the increased capacity in GP surgeries, as community pharmacy is the site of service delivery.

The GFFS evaluation, at the conclusion of the 18-month pilot, reported from the survey of GPs “there was overwhelming support (98% n=442) for the trial GFFS to continue as an ongoing service” and similarly from the survey of community pharmacists “in the opinion of respondents, 92% (n=300), GFFS should continue as an ongoing service”. Patients also saw benefits, the evaluation reporting that “the vast majority of respondents liked the service (90% n=1,284) and want it to continue (93% n=1,318)”.xiii

Some CCGs in England are innovating with the aim of reducing costs in all prescribing. NICE published a Quality and Productivity Case Study in 2014 from Walsall CCG, which provides a practical example of how savings can be made, the CCG implemented a pharmacist-led repeat prescription management service:

“The service was aimed at reducing medicines wastage, minimising possible harm from medicines and improving the quality of repeat prescribing. Cash was saved by ensuring the least expensive, clinically appropriate medicines were prescribed by switching from branded to generic drugs. Practice-based pharmacists worked as an integral part of primary care general practice teams to manage repeat prescriptions.

For the financial year 2013/14 the service delivered net savings of £610,270 and demonstrated that for every £1 invested in pharmacist time there was a saving of £3.05”.xiv

Capacity in GP surgeries can also be gained through repeat dispensing. Around two thirds of all NHS prescribing in primary care is for patients that require repeat supplies of medicines, food or equipment. Repeat dispensing is available to increase patient choice and convenience, to minimise wastage by reducing the number of products dispense which are not required by the patient and to improve GP capacity by lowering the burden of repeat prescriptions.

For these reasons, since 2005 repeat dispensing has been an Essential Services within the Community Pharmacy Contractual Framework (CPCF). However, according the Pharmaceutical Services Negotiating Committee (PSNC) take up as been very low. The PSNC reports that:

Despite the benefits that the service can bring to patients and the NHS, uptake of it has been very low, in part due to lack of engagement by GP practices. In order to increase the benefits being gained by patients and the NHS from this service, it was agreed in September 2014 that from 1 March 2015 there will be a new requirement in the CPCF for pharmacies to give advice to appropriate patients about the benefits of the repeat dispensing service.”

As well as using existing models to drive efficiencies, new schemes are being considered. The Vale of York CCG is trialling a new voucher scheme, or pre-loaded payment card, as a way of helping patients to access gluten free staples from local supermarkets. Coeliac UK supports these innovations, if supported by a positive evaluation of patient outcomes and ongoing monitoring. This scheme is delivering some local benefits, but is likely to need national support from supermarkets and scale to ensure it delivers the savings that warrant set up and administrative costs. This idea was supported by Kevin Foster MP in November 2016, he asked the Parliamentary Under-Secretary of State for Health:

“Will he suggest to CCGS such as Torbay in south Devon that there is a halfway house and that instead of scrapping the prescription of gluten-free products they could provide vouchers that could be taken to a local supermarket?”(Hansard Online, Volume 616)

Other possibilities, not yet being piloted, include web based e-commerce ordering systems, where all products approved for purchase can be loaded on to the site and paid for using a secure wallet (electronic allocation). The patient can then select the retailer, pharmacy or store to arrange a collection.

Such a system could deliver significant savings to the NHS in clinician time and administration for NHS England. However, to be cost effective, such a scheme would need to be developed as a national service, not separate services in 209 CCG areas. All schemes need to be teamed with appropriate local dietary and health support and monitoring or “annual review”.

 

 

 

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NHS England has previously been clear that even time-limited bans on particular groups of patients receiving treatment is inconsistent with the NHS constitution.

But now York is rationing surgery on the basis of smoking and obesity – with the support of NHS England.

The evidence is now coming through that this policy is harming patients, that it is discriminatory – and that it is spreading around England. It is time for ministers to take action and stop blaming ‘local decisions’.

On 1 February this year, the Vale of York Clinical Commissioning Group (CCG) started delaying surgery to patients who smoked or had a body mass index of more than 30. The policy was first proposed in September last year, withdrawn then reintroduced in November.

The reason: to delay immediate spend on surgery. However, it is a totally false economy, and although it may delay CCG spend now, in order to meet imposed spending restrictions, the Royal College of Surgeons says that it may actually increase NHS costs if patients develop complications while waiting for surgery. The College has been clear that rationing policies such as those implemented by the Vale of York CCG are unacceptable.

The York CCG’s ability to make rationing decisions comes direct from the 2012 Health and Social Care Act. The duty on the Secretary of State for Health to “provide or secure” the health service was removed from section 1 of the National Health Service Act 2006, and replaced by a duty to make provision for the health service. The list of services that the NHS had to provide—a principle that had been embedded in the NHS since its inception—was also removed, meaning there no longer had to be a universal list of service provision, and that each CCG could determine its own. In other words, it became a complete postcode lottery: where someone lives determines the healthcare they can access.

Jeremy Hunt told the Health Committee on 18 October 2016 that:

“When we hear evidence of rationing happening, we do something about it…we are absolutely determined to give people the clinical care that they need.”

He added:

“When we hear of occasions when we think the wrong choices have been made, when an efficiency saving is proposed that we think would negatively impact on patient care, we step in…”

Now is the time for Hunt to step in.

Under-funded and at risk of being put into ‘special measures’ the Vale of York CCG took the decision to ration surgery for up to a year for those overweight and up to six months for smokers. I was a senior physiotherapist in the NHS and I am all too aware of the risk factors created by people smoking and being overweight, not least when it comes to surgery. All clinicians understand the risk factors, which is why it is so important that money is invested in public health services.

Instead, the Government switched public health back to local authorities and slashed their grants.

In York, the council has completely cut funding for smoking cessation services and for NHS health checks. It also cut the health walks programme, which was a service to help people exercise more and lose weight.

In other words, public health measures to address smoking and weight were cut first, and then patients were denied surgery because they smoked or were overweight.

You really couldn’t make it up.

GPs are now writing to patients to ask them whether they smoke—not that they have a smoking cessation service to refer them to. They say that it is just “for their records”.

But patients who a GP wishes to be considered for surgery now have to fill out a form declaring their smoking and weight status. Does this letter than go to the surgeon to make a clinical assessment of the risks and benefits? No.

Instead the referral is diverted, and the patient is sent a generic letter and a leaflet telling them that they smoke or are overweight and need to change their ways.

As a penalty, they are denied surgery.

The specialist never gets the opportunity to assess the patient and make clinical judgements accordingly.

The Health and Social Care Act was supposedly going to put doctors, not bureaucrats, in charge. Here we have a system where clinicians are being undermined by diktats from bureaucrats; patients and clinicians have no say; and clinical evidence is left wanting.

The generic letter tells those who are obese that they have to lose 10% of their weight or reduce their BMI to under 30, or wait 12 months. Smokers have to stop smoking for eight weeks, or wait six months. They get a leaflet and a referral to a convoluted website. Any public health practitioner would tell you how inappropriate and ineffective this whole system is. There is no real help available.

The Royal College of Surgeons says that denying or significantly delaying access to NHS treatment does not help patients to lose weight or stop smoking.

Now those being denied surgery are paying a heavy price. I have spent much time talking to GPs and surgeons about this matter, as well as to patients. I have also talked to the CCG, which knows that the system is totally wrong, but because it is in a financial hole and NHS England has waved it through, it is just complicit. It is not standing up for patients in York. In fact shockingly it even delayed referrals made before the policy was introduced, so that the first thing that they received was their refusal letter.

So what is the impact on patients? Well, it is devastating. We already know that waiting times for surgery are going up, and delay in itself worsens conditions. It is true that some patients are exempt – those needing urgent care, the removal of a tumour, or trauma surgery. However, if someone requires a joint replacement because they have not walked well for some time due to osteoarthritis, is in pain, and, as a result of not walking, have put on weight, things are very different. With a new joint, they will be back on their feet. A 12-month delay in being referred – 12 months of degeneration, pain and not being able to walk easily – will mean a more complex operation, a patient who needs more physiotherapy and rehab. Bang!—there go all the savings from rationing and more, all at a cost to the patient and a risk that the long-term clinical outcomes will be worse.

The British Orthopaedic Association said:

“There is no clinical, or value for money, justification…Good outcomes can be achieved for patients regardless of whether they smoke or are obese”.

If someone were 20 stone, they would have to drop to 18 stone before having surgery, but if they were 18 stone, they would have to drop to 16 stone 2 lbs. Why is surgery safe at 18 stone in one case, but not the other?

I’ve also seen a patient who was prescribed medication that had a side effect of weight gain. They required surgery and were denied it because of their weight.

I have had a patient who is active and works full time, but is over the weight threshold. She needs surgery to enable her to conceive. She is not young. Surgery is needed now, as recommended by her GP. However, it was denied and could result in her never having a family.

A patient with hypothyroidism, a chronic condition that leads to weight gain, needs surgery for gastrointestinal abnormalities but, despite their condition, will be restricted.

One patient was a very fit body builder, but was refused surgery because of their high BMI. The case for delay has not been evidenced.

We know that there is a strong correlation between smoking and obesity, and social and economic deprivation. As the British Medical Association said, this could also be seen as rationing on the basis of poverty. Those with mental health challenges have a higher propensity to smoke, and those with chronic conditions are more likely to also have elements of depression and possible weight gain. Many people find it difficult to lose weight or give up smoking.

This policy is harming those with co-morbidities. It is creating problems, not solving them. As the Royal College of Surgeons says,

“It risks preventing a patient from seeing a consultant who can advise them on the best form of treatment…Surgery may be needed to help someone lose weight.”

David Haslam, chair of the National Institute for Health and Care Excellence, said that rationing of surgery concerned him. He says that the NICE osteoarthritis guidelines make absolutely clear that decisions should be based on discussions between patients, clinicians and surgeons, and that issues such as smoking, obesity and so on should not be barriers to referral. These are the experts.

The Vale of York CCG has gone down this route, and others are now following, with 34% of CCGs looking to ration on the basis of obesity or smoking. Harrogate and Rural District CCG and East Riding of Yorkshire CCG target smokers and those who are overweight with a six-month delay. Wyre Forest, Redditch and Bromsgrove, and South Worcestershire CCGs ration on the basis of pain impact. South Cheshire CCG requires a BMI of less than 35—not 30—as does Coventry and Rugby CCG. The policy is spreading. Although York is the worst example of rationing, every clinician knows that it is wrong and contravenes their professional duty of care.

Clinical decision making is needed. Patients have to be part of this too. And public health programmes need restoring. The passive approach of the CCGs is setting patients up to fail.

The policy is discriminatory, clinically contraindicated and financially perverse. I would be the first in this House to advocate health optimisation programmes supporting smoking cessation or providing help to improve diet, exercise, wellbeing and lifestyles, but to leave someone in pain or without a child brings our NHS into disrepute.

The rationing of surgery must end. It is time for Jeremy Hunt to step in, as he promised the Health Committee he would.

First published on Open Democracy

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Wales is the only part of the UK where “deemed consent” to organ donation applies. The means that any deceased who is over 18 years, is mentally competent and who had lived in Wales for  12 months is deemed to have given consent to organ donation unless they have formally registered their objection.

About a decade ago, the UK had a low organ donation rates (13 / million population) compared to countries such countries as Spain, USA and France. As well it had a much lower rate of next of kin refusal. In Wales around three people per month died while waiting for an organ donation with about 300 people on a transplantation list.

The issue was considered by the National Assembly for Wales Health and Well-being Committee in 2008. Though its report did not recommend  “presumed consent”, the Welsh Government felt there was sufficient public support for the proposal and indicated its intention to legislate on the matter. A commitment to do so was included in the Welsh Labour, Plaid Cymru and Liberal Democrat’s manifestos for the 2011 National Assembly election.

The Bill was introduced into the National Assembly in December 2012. Over the next year an extensive debate and consultation took place. There was broad support for its purposes though concern was expressed, by Christian and Islamic faith groups in particular, that “deemed consent” was not real consent and that it undermined the altruistic virtue of the gift of donation.

A key feature of the legislation was its “soft opt-out” option whereby close relatives are involved in the donation decision with particular attention being paid to any evidence that the deceased may not have wished to have their organs donated.

In the run up to the beginning of the legislation in December 2015 there was an major campaign to both explain the new legislation and to raise awareness on the wider organ donation need in Wales. The legislation will require the Welsh Government to maintain a programme of promoting public awareness and to report on progress.

At the end of the first year of the legislation the Welsh Government reported “… the latest figures show that 39 organs from patients whose consent was deemed have been transplanted into people who are in need of replacement organs.

In the two years prior to the introduction of the new system of deemed consent, .. (we) made significant efforts to inform the public of the exact nature of the upcoming changes in respect of transplantation activities. During this period the number of organs transplanted increased each year, from 120 between the 1 December 2013 and 31 October 2014, to 160 between 1 December 2015 and 2016.

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If something can’t go on for ever then eventually it will stop – so says Stein’s Law – attributed to the eponymous American economist.

Senior Health service managers are now openly admitting that the NHS cannot continue in its current state. Writing in the Observer recently, Chris Hopson, Chief Executive of NHS Providers commented: ‘It is surely now time for our national health and political leaders to publicly acknowledge that the NHS can no longer deliver what is being asked of it for the funding available. The evidence that there is now an unbridgeable gap between what the NHS is required to deliver and the money to pay for it is both widespread and compelling.’

The much vaunted plan to save £22 billion through ‘efficiency savings’ has been described as ‘virtually impossible’ by former Health Minister Norman Lamb and as being ‘substantially off target’ by the Health Foundation.

Despite the sombre inevitability of Stein’s Law, the NHS shows no sign of going down quietly. As former chancellor Nigel Lawson observed, the NHS is the closest thing the UK has to a national religion. Any politician brave or foolish enough even to suggest that the funding model for the NHS requires amendment or adjustment is instantly attacked by a variety of NHS zealots in a manner verging on the hysterical. Taking on the National idol is a recipe for political suicide, so Mr Hopson’s call for an ‘open, honest, realistic, national debate’ about the future shape of NHS services seems unlikely to be realised.
After 30 years working at the coal face in the NHS I have come to ignore what politicians and managers say and instead watch what they do. Few informed people dispute that the way the NHS does business needs to fundamentally change – the tricky part relates to who can make that case to the public and, more importantly, who is going to be responsible for forcing the change through in the face of personal and political abuse verging on the criminal – just take a look at the behaviour of junior doctors towards the current Health secretary for an example.

Redrawing the boundaries of what the NHS provides is one way by which the NHS reduces the volume of work it has to do. In my own specialty, the boundaries for varicose vein surgery have been changed substantially – it is no longer sufficient for patients to have aching and discomfort from varicose veins to get effective treatment. Instead the definitions have been changed, so that only the most severe cases with established skin damage leading to an ulcer can be put on the operating list. Elective surgery like varicose veins is an easy target for this type of manipulation – by redrawing the boundaries, health service managers simultaneously reduce the number of patients on waiting lists (thereby facilitating attainment of targets) and reduce the number of procedures carried out – thereby reducing cost to the commissioning groups. Similar schemes are in place across most of the country for a variety of other complaints such as hernias, cataract surgery and joint replacements. Initiatives to deny treatment to patients on the grounds of smoking habits or obesity have recently been reported.

Restriction of access to treatment on grounds of ‘insufficient severity’ preserves the ideological purity of the NHS ‘free at the point of use’ by sweeping the problem under the carpet. Unfortunately, pretending that the need has disappeared by a semantic redefinition does not make the problem disappear for the patient who cannot afford to pay for private treatment. This is not an open and honest way of dealing with real world clinical problems.

A serious examination of low cost social insurance systems or co-payment plans similar to those that exist in most developed Western economies is long overdue. Dogmatic adherence to a monopolistic model of centrally funded universal healthcare paid for exclusively via general taxation will not meet the health requirements of our population in the coming years and redefining the definition of severity of varicose veins isn’t going to solve the problem either.

Eddie Chaloner is a consultant vascular surgeon who operates at Lewisham and Greenwich NHS Trust and through his private practice Radiance Vein Clinic. Chaloner pioneered endovenous laser surgery treatment for varicose veins in the UK, which has revolutionised the treatment of this common condition worldwide.

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In the 1976 film All the President’s Men, the informant, Deep Throat, advised the investigative journalists, Woodward and Bernstein, to “follow the money” if they wished to get to get to the bottom of what was going on. And the same advice is likely to apply if we are to evaluate national and local government policy priorities in addressing inequalities.

The vast bulk of public spending in Wales is undertaken by local health boards and local authorities. Probably correctly, the Welsh Government has decided that “big is best” in terms of the size of the these bodies to delivery these services.

Whatever the advantages in bigger delivery bodies they can can create problems in terms of transparency and public accountability as power is concentrated further from communities and citizens. And as our public bodies become bigger and more centralised “following the money” becomes more and more difficult.

A substantial amount of Welsh Government funding is allocated to our health boards and local authorities through needs based formulae. But once the money makes its way to these bodies it is very difficult to monitor if it is being spent in line with the allocation principles. And as these recipient bodies get bigger this task becomes even more difficult.

Local authorities in Wales do not like hypothecation of Welsh Government funds. They wish to be free to make local decisions in line with local needs. But the methodology of resource allocation at a local level is often very opaque and it is very difficult to hold our councils to account in terms of their spending priorities.

In this era of austerity there is no doubt that our most disadvantaged citizens and communities are bearing the heaviest burden. The Welsh Government is working hard to mitigate this though a range of policies but it is crucial that this intention is mirrored where it really matters — at the front-line grass-roots level.

At the end of the day it is outcomes that matter most and it is excellent that programmes such as the Foundation Phase and Flying Start are subject to regular independent evaluation. But in many cases evidence of outcomes can take some time to emerge. In these situations intermediate or proxy measures have to be used and resource allocation ( qualitatively and quantitatively) is often an important guide.

Our most vulnerable citizens and communities are more dependent on public services. They are therefore the most vulnerable when vicious austerity programmes are being implemented. It is vital that effective means are put in place to make sure that our reduced levels of public investment goes to where the need is greatest. Our public bodies must have clear and transparent funding streams in place and that both local and national scrutiny take place to ensure that best outcomes are delivered.

Welsh Health boards cover populations from 132k in Powys to 678k in Betsi Cadwallader. Within health boards 4% of Powys’ population is in the poorest 20% compared to 39% in Cwm Taf and 27% in ABMU. But do we know that within these health boards that resources are allocated in line with this level of need at a local level?

In the recently published policy on primary care workforce, A Planned Primary Care Workforce for Wales, the Welsh Government has highlighted the importance of the emerging 64 “primary care clusters” as a basis for health care planning. These clusters have a population size between 25k and 100k. They are therefore a more sensitive unit size for health care planning on the one hand but also for measuring the level of health care investment and outcomes. Some work has already started on this and the Workforce policy is committed to building on this.

As this information becomes more available it is important that Health Boards “follow the money” and resources to ensure that their allocation is in line with needs and is producing the required outcomes.

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Personal budgets are in the headlines after Pulse published research based on FOI requests to CCGs.  The headline on BBC’s Today programme was “Treats instead of Treatments” and the line promoted by Pulse was that Personal Health Budgets (PHBs) lead to inappropriate ‘non-evidenced based’ spending by the NHS. The examples provided included a summer house, a Wii Fit consul, an iRobot, holidays, horse-riding, music lessons and a sat nav device; or as Pulse put it in their scare headline:

“NHS allows patients to splash cash on holidays, summer houses and Wii Fits.”

Interestingly this shock headline generated the most intense media interest in the idea of a personal budgets in my career. I have been working on these ideas since 1990, and invented the concept of personal budget.  I have seen how powerful it can be for people to have more control, choice and creativity in their lives; although I’m also very aware of how good ideas can come unstuck and be corrupted.

Thomas Edison once said of innovation, “The worst is to come, for it takes about seven years to convert the average man to the acceptance of a solved problem.” However I think that when it comes to the welfare state seven years is something of an under-estimate. Government can both resist and distort innovations, and the normal rules of human behaviour don’t apply when you are dealing with vested interests of the civil servants, politicians and the professional establishment. As Robert Townsend put it:

“It’s a poor bureaucrat who can’t stall a good idea until even its sponsor is relieved to see it dead and officially buried.”

However, once Government does get hold of an idea then everything changes. After the New Labour Government became enthused by these ideas in 2005 I watched them, quite naturally, slip from my control, and that was a humbling experience. So it was interesting for me to find myself defending personal health budgets on the BBC and Sky when they are now being implemented by a Government that I despise.

Looking at the report by Pulse in detail is also interesting, both for what it reveals and for what it hides. It provides a useful indication of the overall level of spending on PHBs, estimated at £123 million per year for 2015-16, which is just over 0.1% of NHS spending. Yet I suspect that the amount spent on things Pulse deems inappropriate must be minuscule, and I could find no relevant data.

Furthermore we learn that the number of people using PHBs is 4,800, which suggests an average package cost for individuals of £25,600. This is a significant sum and it probably reflects the fact that PHBs have been targeted on those people with most significant needs, often people on continuing care packages. However, this fact, and the significant needs of those using PHBs, was not mentioned in the report.

Another interesting point raised by Pulse was the fact that, in a survey of more than 1,500 patients by the Patient Information Forum, more than half of patients with long-term conditions felt they would be ‘unable to make decisions’ on spending a PHB. I must admit to be confused here. Surely this means that a significant number of people do feel ready to make such decisions. That sounds like a great starting point for an emerging innovation like PHBs. There is clearly significant interest and demand already.

The Pulse report also touches on some of the real issues, for example: How do we define who is eligible and what level of funding should be made available? Dr Brian Fisher rightly suggests these issues are critical and that without the necessary controls PHBs could become unaffordable. However I doubt this is the main risk for the current programme. Progress in implantation remains slow and getting a PHB is far from easy. If funding levels are successfully set around current norms then the programme will continue to generate efficiencies – not increased costs. However effective implementation will be vital if efficiency is to be guaranteed.

In contrast to this, Pulse also argues that these individual arrangements may lead to the opposite problem – increased cost-cutting. In the UK’s current context I suspect this is the bigger risk. Monolithic and institutional services are much harder to cut and much easier to defend; and while the 30% cut to social care in England may not have been caused by the use of personal budgets it certainly certainly hasn’t help to defend social care from this assault.

However the one example of cost-cutting provided by Pulse is problematic. Pulse cites a day centre that was forced to close because its funding had been put into personal health budgets. I must say this sounds quite odd to me. NHS money isn’t labelled in advance like this. Surely if the money ear-marked for personal health budgets (0.1% of spend) could not be used to fund the day centre then some of the other (99.9%) NHS spending could have been used? It sounds to me like somebody’s been making up excuses:

“Sorry, we just had to close your day centre so as to fund these wacky personal health budgets.”

In reality there was clearly not enough support from within the CCG to justify funding the day centre. More importantly, this touches on a profound weakness in the Pulse argument. If personal health budgets are of any value then they must allow people to change how money is currently used. If money is used differently then it cannot be used on the things that it was spent on in the past. Is this really a bad thing? Do services have a divine right to exist? Moreover, while Pulse questions the evidence base of PHBs, what is the evidence base for mental health day centres? People do not use day centres because it is a carefully thought through and personalised solutions to their needs. People use day centres because that is where the system has historically invested money.

The final major criticism mentioned by Pulse (although interestingly not picked up by any of the media I spoke to on the day) was the ideological question: isn’t personalisation just a right-wing neoliberal idea? Now, personally, this is the most puzzling criticism for me. I am still struggling to understand how shifting socio-economic power to disabled people or to people with long-term health conditions is right-wing. I still don’t understand why leaving power with the NHS bureaucracy or medical establishment is left-wing. We’ve got something very muddled here.

Of course I can see that there is a severe danger that the current trend to ‘target’ ‘means-test’ and ‘privatise’ may be used to undermine the principles of the NHS. However I suspect that the real risk comes from the 8-9% of NHS spending that has already been privatised to the likes of Virgin.  It is private companies, not citizens and patients, who will eventually undermine the NHS, if we choose to let them.

Behind the headlines and the arguments what is clear is that many in the medical establishment are not convinced of the benefits of PHBs and are now willing to be much more aggressive in their resistance to their expansion. So, the question we must ask is why? I can see at least two possible hypotheses:

  1. Senior doctors and others are genuinely concerned with the well being of the welfare state. They wish to defend the principles of free and universal services and to reduce inequality and poverty in the UK and they genuinely believe that personal health budgets threaten the welfare state.

OR

  1. Senior doctors don’t want to share power with patients. They are worried they will lose control and that ordinary citizens will have more control individually and may start to ask more challenging questions collectively.

Both these hypotheses would explain the extreme scaremongering that we find in the Pulse report. I hope the first hypothesis is true. For if it is the first hypothesis that is true then, over time, more and more doctors will see the benefit of personal health budgets and will understand that it doesn’t have to threaten the NHS but can be part of extending the principles upon which the NHS was built. Personal and citizen empowerment is what the NHS should be about.

Moreover if these current fears reflect a real commitment to social justice then I expect to see the BMA and other leading professional bodies come into alliance with disabled people, trade unions and with the braver charities, in order to challenge the current Government’s vicious attack on the welfare state. We will see active protests to:

  • The selling off of the NHS
  • Deep cuts to social care and the means-testing of social care
  • Cutting benefits, especially for disabled people and people who are sick

One interesting test is coming up soon, for the UK Government is currently being investigated by the UN for breaching the human rights of disabled people. I look forward to clear and powerful statements by the BMA supporting the rights of disabled people to have the resources that are necessary for them to be full citizens – whether those resources come from the NHS or from elsewhere.

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The National Assembly for Wales debated the Cancer Treatment Fund on Wednesday.

The Welsh Labour Government is clear that it will not be replacing existing evidence-based system with a cancer drugs fund like that in England, which its own chair has admitted provides funding for cancer drugs which have ‘no impact on survival’ and ‘uncertainty as to whether quality of life is improved or not’.

  • All medicines approved by the National Institute for Health and Care Excellence (NICE) and the All Wales Medicines Strategy Group (AWMSG) are made routinely available for patients in Wales. Medicines not approved by NICE or AWMSG are generally found to be too costly for the benefit obtained – they are not cost-effective.
  • We believe all cancer patients should be able to access the best possible treatments but for this to happen within the NHS budget, prices set by the pharmaceutical industry for new, life-extending drugs must come down. It is impossible to put a price on life but it is not impossible to put a fair price on drugs.
  • Cancer patients in Wales are more likely to receive evidence based, cost-effective medicines than in England and the Welsh Government is working hard to ensure that there is more consistency across the whole of Wales.
  • Wales invests in clinically-proven medicines for all by putting money into medicines which have been approved by the All Wales Medicines Strategy Group (AWMSG) and the National Institute for Health and Care Excellence (Nice).
  • All new medicines considered clinically and cost-effective by Nice or AWMSG are already routinely provided to patients by the NHS in Wales. Where drugs are not approved, mechanisms are in place to ensure individual patients have access when clinical exceptionality is demonstrated.
  • The All-Wales Medicines Strategy Group (AWMSG) has carried out 119 appraisals of new medicines since April 2011, of which 105 have been recommended for use in Wales.
  • As of October 2014, AWMSG had appraised and recommended 19 new cancer medicines for use in NHS Wales. These 19 cancer medicines cover 23 clinical indications and all are routinely available to eligible patients. Only nine of these medicines are available in England via the cancer drugs fund.
  • A recent study by the University of Bristol published in the British Journal of Cancer, about whether the English cancer drugs fund led to faster uptake of cost-effective drugs, concluded Wales had a faster uptake of the drugs most recently launched and subsequently recommended by Nice.
  • The research also found medicines considered not cost-effective by Nice were more frequently prescribed in England than in Wales and the cancer drugs fund in England did not expedite access to new cost-effective cancer medicines when compared to Wales.
  • In September, Wales became the first country in the UK to make the new pancreatic cancer drug Abraxane available to all eligible patients in Wales on the NHS – the only part of the UK.
  • The King’s Fund has questioned the cancer drugs fund, as has the ‘British Medical Journal’, which questions the cancer drugs fund in terms of what it delivers.
  • The ‘British Medical Journal’, for example has pointed out that the cancer drugs fund is paying pharmaceutical companies over the odds for drugs that, in the past, would have cost the NHS a lot less.
  • The medical journal, the Lancet is also on record as stating that “The CDF is a product of political opportunism and intellectual incoherence, which undermines the evidence-based approach to the allocation of NHS resources.” It also described the fund as “intellectually indefensible” because funds for other conditions such as dementia and multiple sclerosis had not been set up.
  • The Welsh Labour Government’s policy on cancer drugs is based on clinical evidence – not free market ideology.
  • The Welsh Government believes that it is important that there is a system in place for ensuring that patients have access to drugs where their circumstances dictate that, which is why in Wales we have the individual patient funding requests process, in order to do that.
  • However, simply throwing money at pharmaceutical companies, which is what the cancer drugs fund does, is not the way forward for Wales.

WELSH GOVERNMENT ACTION ON CANCER

Spending

  • The NHS in Wales is spending more than ever on cancer care, thanks to the Welsh Labour Government.
  • Spending on cancer has risen significantly since 2007 when the Welsh Government allocated £314.8m to cancer.
  • The latest figures – from the annual NHS Expenditure Programme Budgets – show that spending on cancer care by the Welsh NHS reached a record high at £360.9m in 2012-13.
  • Spending per head of population on cancer in Wales was £117.41 in 2012-13. This is £10 more per head than in England – spending per head on cancer was £107.21 in England in 2012-13

Cancer targets

  • The Welsh Government has not set a formal target for first cancer outpatient appointments; we expect all health boards to see patients within 31 or 62 days depending on the particular pathway they are on (see below).
  • The Health Minister wrote to all health boards in Wales in summer 2013 reminding them that having a first outpatient appointment in 14 days (10 working days) is best clinical practice and they should benchmark themselves against this internally.
  • Performance against this standard is discussed at the regular quality and delivery meetings but it is not a published waiting time target in Wales.

The current cancer waiting times targets in Wales are:

  • Everyone referred by their GP via the urgent suspected cancer route is put on a 62-day pathway, during which all investigations (tests) are carried out. This is the same in Wales and in England.
  • The target in Wales is for 95% of patients newly diagnosed with cancer via the urgent suspected cancer route to start definitive treatment within 62 days from GP referral. In the first quarter of 2014-15 (April to June) 87.4% of patients were seen within that time.
  • The target in England is for 85% of patients newly diagnosed with cancer via the urgent suspected cancer route to start definitive treatment within 62 days. In the first quarter of 2014-15 (the latest figures available), 84.1% of patients were seen within this target.
  • There is also a 31-day cancer pathway in England and Wales.
  • For patients newly diagnosed with cancer not via the urgent route the target in Wales is that 98% should start definitive treatment within the target time of 31 days. In the first quarter of 2014-15 (April to June) 98.1% of patients were treated within 31 days.
  • In England, figures for the first quarter of 2014-15 (the latest figures available) show 97.8% of people treated began first definitive treatment within 31 days of receiving their diagnosis

Welsh statistics

English statistics

Survival rates

  • Wales has shown the biggest improvement in cancer survival among the four countries of the UK since devolution.
  • One-year survival rates for cancer have increased faster in Wales than in any other part of the UK, rising from 60.24% for 1995-99 to 68%.
  • Five-year survival rates are also increasing from 44.61% in 1995-99 to 51.43% in 2001-05 (latest figures available).

Research

  • Wales is also at the forefront of the global search for a cure for cancer.
  • The Wales Cancer Bank celebrated its 10th anniversary in 2014. Almost 10,000 patients have agreed to donate tissue and blood samples to this invaluable resource which is available to cancer researchers around the world.
  •  To date, it has provided samples to Welsh studies and to researchers working on studies as far afield as South Korea and Canada.
  • Wales is at the forefront in the care and treatment of patients with cancer of the brain and central nervous system, according to results from patient experience surveys from around the UK.
  • Patients with brain and central nervous system tumours who took part in the 2013 National Cancer Patient Experience Survey reported some of the lowest outcomes in England – they reported the lowest experience scores or almost the lowest in 12 areas of the survey, including saying they felt as though they were treated like a set of symptoms.
  • In contrast in Wales, patients with brain and central nervous system tumours reported the highest results in three areas of the 2013 Wales Cancer Patient Experience Survey and the lowest in only two areas.

Patient Experience

The 2013 Wales Cancer Patient Experience Survey, which was carried out in partnership with Macmillan Cancer Support, found that 89% of patients rated their care as excellent or very good. This rose to 97% of patients who thought their cancer care was good.

Cancer Delivery Plan – progress

The second annual report – for 2013 – charts progress against the aims of the Welsh Government’s cancer strategy shows progress in several areas of cancer care in Wales.

The report shows that:

  • Wales has seen the biggest improvement in cancer survival in the UK;
  • An increase in the uptake of the Human Papilloma Virus vaccine (HPV), with levels in 2012/13 at 86.6%;
  • A 5% increase in recruitment to clinical trials;

The completion of a cancer patient experience survey, which shows 89% of cancer patients think their care is excellent or very good.

Prevention and Public Health

  • The Welsh Government also believes that people must take personal responsibility for their health and well-being. This includes opting for the healthy choice – not smoking, drinking sensibly, eating healthily and exercising regularly.
  • Smoking and obesity are major risk factors for cancer and a healthy diet and physical activity can reduce the risk of cancer.
  • The Welsh Government’s Health Challenge Wales, the ban on smoking in public places and campaigns to discourage smoking also show how Labour in government in the Assembly is tackling the causes of cancer by encouraging people to take the steps needed to lead healthier lives.
  •  The Welsh Government has also signed up to the first UK-wide Physical Activity guidelines which recognise the link between physical activity levels and cutting the risk of obesity and cancer.

Key worker for every cancer patient

  • The last Welsh Labour Government introduced a key worker for every cancer patient diagnosed with cancer in Wales from March 2011 as part of new cancer rehabilitation standards.
  • The key worker is responsible for coordinating the care of patients for the duration of their treatment in hospital and in primary care through their GP, in recognition that people living with cancer have ongoing needs following the end of their main treatment.
  • The key worker for each patient is the most appropriate NHS worker, depending on where the patient is in their cancer treatment and the patient therefore knows who to contact at all times should the need arise. Although the standards are aimed at adults, this is also a requirement for paediatric cancer patients.
  • The standards were developed by the Cancer Services Co-ordinating Group in consultation with cancer specialists and patients.
  • This means that Cancer patients will know who to contact at all times should the need arise during their treatment.

Screening

We have two very successful national cancer screening programmes in Wales. Breast Test Wales screens by automatic invitation those women aged between 50 and 70, every three years. Cervical Screening Wales invites women between the ages of 20 and 64 for a routine test, every three years. The Welsh Government has also invested in new state-of-the-art mobile screening units, which will help improve access to health checks in rural areas. The Labour Welsh Government also invested £10million in new breast cancer screening equipment to replace analogue machines with digital equipment in the mobile Breast Test Wales units and breast assessment centres. Health Commission Wales has received funding from the Welsh Government for the phased implementation of a national bowel cancer screening programme in Wales. Bowel Screening Wales is in the process of rolling out a national bowel cancer screening programme for men and women aged 50 to 74. The programme began in October 2008 for the 60 to 69 age group and will be fully implemented by 2015. The screening will take place every two years. This service is expected to reduce mortality from bowel cancer by 15 per cent in the screened population.

 Treatment of Welsh patients in England

In Wales, 16,000 patients are treated for cancer in total every year – 15,000 of them would not be sent to England for treatment. Patients are not routinely denied cancer treatments available on the NHS. Welsh patients routinely receive cancer treatment and other forms of care at English hospitals as, in some parts of Wales such as Powys; these are their local hospital providers. Some Welsh patients will receive specialist services at English hospitals, including specialist cancer care, where necessary. This is because hospitals require a critical mass of patients to operate some specialist services – Morriston Hospital, in Swansea, serves as the specialist burns centre for Wales and the South West of England. The border between England and Wales is a porous one – patients from England and Wales receive care from the health services on either side of the border.

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I was recently questioned about the future of the NHS, during a live debate on the BBC Radio 4 programme Moral Maze, on 9 July 2014. One of the panelists took me to task for being a “bean counter”. I got side-tracked by this somewhat less-than-flattering characterisation of my professional role as a health economist, and so only managed to get across three of the six points I had planned to make. For what they are worth, this blog sets out all six points. And, as an added bonus, it then concludes by explaining why I am proud to be a ‘bean counter’.

This blog sets out personal ethical views on a number of controversial matters of social value judgement. That is what the BBC programme makers asked me to do, and I hope my professional colleagues will not ‘tut tut’ too loudly when they see me doing it. Professional economists are supposed to help decision makers and stakeholders think through the implications of a range of alternative value judgements, rather than to impose their own particular personal or professional value judgements. However, this blog post merely voices my own value judgements – it does not impose them on anyone.

Point number one is that the NHS performs rather well compared with other health systems across the world. It is relatively cheap, relatively good, and very fair. The UK currently spends about 9% of national income on health care, just under the OECD average, compared with 18% in the US. People in the UK are on average healthier than those in the US – even rich people with access to the best available health care in the US. And the UK regularly comes top of Commonwealth Fund surveys of fairness in high income health systems. The UK NHS is widely regarded as the fairest health system in the world, with the possible exception of Cuba.

Point number two is that financial strain on the NHS will get worse in decades to come – potentially much worse. This is due to a fundamental clash between health economics and tax politics. The tax politics is obvious. Voters do not like high taxes, so there is a limit to how far taxes can be raised, even to pay for something as popular as health care. The health economics is less obvious, but surprisingly simple when you think about it. As countries get richer, they spend a higher percentage of national income on health care. There is a simple reason for this. As we get richer, which is more valuable – a third car, yet more electronic gadgets, or an extra year of life? (I am here paraphrasing Hall and Jones, who predicted that health spending in the US will rise to 30% of national income by 2050). In the technical economic jargon, health care is a ‘superior’ or ‘luxury’ good. Do not be misled by this jargon – it does not mean that health care is an unimportant frippery. Quite the opposite. Effective health care that extends life and improves quality of life is much more important than fripperies. That is why rich people want to spend such a large share of their incomes on it.

Point three is that my own preferred solution to this problem – and here you will notice that personal ethical opinions are coming thick and fast – is gradually to ration NHS care more explicitly and extensively, within whatever budget the electorate are willing to vote for. That would enable the preservation of a tax-funded national health service that continues to provide a fairly comprehensive package of cost-effective health services to all citizens, that is nearly free at the point of delivery. (The NHS has never been 100% comprehensive or 100% free at the point of delivery). The rationing should be done through a transparent deliberative process, and based on a range of ethical principles, including cost-effectiveness, need, and compassion. Chief among these principles, however, should be cost-effectiveness – the principle that scarce NHS resources should be used to do as much good as possible in terms of extending people’s lives and improving their quality of life.

Point four is that more extensive rationing is a better and fairer solution to the problem of preserving the NHS than more extensive user charges. User charges should not be imposed on cost-effective forms of health care, such as GP visits. Charges for GP visits deter people – especially poorer people – from seeking preventive and diagnostic care. Without effective prevention and diagnosis, health problems progress to become more harmful to the patient and more costly to the NHS. If health care is cost-effective it should be provided free on the NHS; and otherwise not. People can then pay for non-cost-effective care themselves, either out of pocket or via ‘top up’ private health insurance. The slogan “all necessary care should be free” should be re-interpreted as the slogan “all cost-effective care should be free”.

Point five is that fervent ideological debates about ‘competition’ and ‘choice’ and ‘markets’ and ‘privatisation’ are largely red herrings. What matters is that the NHS provides a fairly comprehensive range of cost-effective care to all citizens, so that everyone receives the care they need at a cost they can afford. Who owns or manages health care provider organisations does not matter directly in and of itself. Ownership and management may matter indirectly, of course – but only insofar as they impact upon the cost, quality and social distribution of health care. The direction and size of such impacts in different contexts is a factual matter, to be settled in the court of evidence and experience, rather than a matter for fervent ideological debate.

Point six is that a more extensively rationed NHS can still preserve the founding principles of the NHS. On the delivery side, it can preserve the principle of ‘equality of access’ to all necessary health care – where ‘necessary’ means ‘cost-effective’. And on the financing side, continued tax funding continues to preserves the principle of ‘solidarity’, that the strong should help the weak – the rich should help the poor, the young should help the old, and the healthy should help the sick. Finally, the NHS also preserves the benefit of financial risk protection. As was stated in the public information leaflet sent to all UK citizens at the founding of the NHS in 1948, one of the main benefits of the NHS is that “it will spare your family from money worries in time of ill health”.

In conclusion, the best way to preserve the NHS is to engage in more explicit and extensive rationing. This in turn will require more of what my Moral Maze inquisitor called “bean counting”. More evidence will be needed to inform a suitably transparent and deliberative rationing process. In particular, more evidence will be needed about the impacts of different NHS services on cost, length and quality of life, patient experience, need, compassion and dignity, and other ethically important outcomes and processes. This form of ‘bean counting’ is not an ignoble exercise. The ‘beans’ in question here are people’s lives. People’s lives matter, and if seeking to improve the length and quality of people’s lives makes me a “bean counter” then I am proud to be one.

Dr Richard Cookson, is Reader and NIHR Senior Research Fellow at University of York Centre for Health Economics

This article was first published on the Academic Health Economists’ Blog

The Academic Health Economists’ Blog

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Over the next 40 minutes or so I will attempt to explore a serious problem of resource allocation and health rationing in the NHS and, I hope, show that this problem is far from unique to the NHS but also exists in healthcare systems throughout the world. And I will end with a call for those who are leading the NHS in our communities up and down the country to play their part in leading public debate on these difficult issues.

First, a health warning. I am a practising lawyer who has spend time as an MP, government minister and over a decade acting for and against NHS bodies in a wide variety of challenging situations. My views are anecdotal not systematic. I hope they are emerge of my various experiences but they are not supported by volumes of academic research.

It is a highly appropriate time to be considering the processes of managing change in the NHS for 3 reasons. First, because the NHS has just lost – by retirement – a significant figure in Sir David Nicholson and welcomes Simon Stevens – not yet Sir Simon – who takes over as Chief Executive of the NHS Commissioning Board, known as NHS England. A change of leadership gives a window of opportunity for an incoming leader to set a new agenda. However the importance of these issues is shown by the fact that Sir David, free of the chains of office, tweeted a link to an article I wrote for the Guardian sketching out these issues, hence inviting his 4000+ twitter followers to read it.

Secondly, the NHS is also facing an unprecedented financial challenge in 2015/16. This is, “coincidentally”, the year immediately after the next General Election. As all politicians and senior civil servants know, nothing serious happens in the year before a General Election. Policy must be implanted in the first 18 months of a Parliament or the political vested interests will create political inertia and the chance for change has been lost.

Thirdly, public expectations of some public services are very different to before the 2007 financial crash. At this time the public appears to accept that public sector financial constraints mean that tough decisions need to be taken in some areas of public service. My experience – as a somewhat electorally unsuccessful politician – suggests to me that this mood music will not last. It will not be long before strident voices will assert the need for completely comprehensive and perfectly functioning public services, paid for by someone else. I exaggerate for effect of course – but there is an element of truth in the caricature.

I start by setting out the premise of this lecture: The NHS is not spending the money it gets from our taxes in a way that delivers cost effective and clinically effective healthcare for the population it serves. As a service, it has the tools to deliver effective change but key decision makers have too much timidity about using these tools to do their job properly.

Why do I say the NHS is not spending our money effectively enough? First, some of the things our clinicians do – spending NHS money – are a complete waste of money; but identifying those “things” is fraught with difficulty. A senior clinical director told me that the most expensive thing in a hospital was a pen. Doctors use pens to order tests, sign off investigations and set out clinical requirements in clinical notes. The way that our hospitals and GP practices are organised means that doctors exercise their professional discretion to do things – all of which cost taxpayers money – with little or no enforceable financial accountability for their individual decisions. There are, for example, no legal restrictions on the drugs that a GP can prescribe for a registered patient of his or her practice, regardless of the cost or potential benefit (For the details see Professor Chris Newdick’s Chapter at paragraph 1.184ff in “Principles of Medical Law” (3rd Edition) (OUP)). That is not to suggest that our doctors are routinely acting in an irresponsible way; but I do suggest that there are no clear limits on the interventions that the NHS will finance – at least at GP level – for that individual patient sitting in front of the doctor. The duty of care to the patient implies a duty to do the best for that patient but there is no clear balancing duty to make effective use of scarce publicly funded resources.

The Dartmouth Institute for Health Policy and Clinical Practice has estimated (note 2 of Bloche: New England Journal of Medicine 10.1056/NEJMp1203521) that 30% of spending on healthcare in the US is wholly ineffective. That means that money is spent on medical interventions which not only are not clinically effective but had no reasonable prospect of being clinically effective – all arising from clinical discretion. However that number must be treated with some caution because, as Lord Leverhulme once said, he knew half of his advertising was wasted, but didn’t know which half (This quotation has been ascribed to a number of people who have purchased advertising over the years).

Secondly, with the growth of evidence based medicine, there is an increasing understanding of what works and what does not work in medicine – at least at the population level and the best way to organise services to deliver the best outcomes. That growing body of understanding does not, of course, mean that medical interventions delivered in accordance with the evidence will work for the patient at the individual patient level. One of joys of life – reflected in medicine – is that we are all different but we are increasingly understanding more about how to organise services so that, with pooled disciplines and clear protocols, outcomes will improve for a greater number of patients.   The improvements in outcomes for patients with strokes in London which centralised initial treatment at a limited number of hospitals is a well-known example of this working in practice.

Reorganising the locations at which NHS services are delivered improves outcomes and saves lives in 2 ways. First, directly, lives are saved by the delivery of better organised services. Secondly, better use of NHS resources in one area of medical treatment frees up resources to be used in less glamorous areas, and thus delivers better outcomes for those patients.

What are the principles that should drive decision making? At the policy level, it seems a statement of the obvious to say that, outside proper research studies, the NHS should only invest its resources in medical treatment that is both cost effective and has proven clinical effectiveness. The NHS has developed many statements to that effect but – to pick one – this is the relevant paragraph from the NHS England Ethical framework (Principle 6 of NHS England Ethical Framework):

“The NHS Commissioning Board should only invest in treatments and services which are of proven cost-effectiveness unless it does so in the context of well-designed and properly conducted clinical trials that will enable the NHS to assess the effectiveness and/or value for money of a treatment or other healthcare intervention”

The justification for this approach is that, in an NHS where demand far outstrip supply, every decision to invest resources in treatment of one patient means fewer resources to treat other patients. The opportunity cost of treating each patient can only be justified if there are proper grounds for believing that the treatment is both clinically effective and cost effective. That may sound harsh because it proposes denying clinically effective medical treatment to someone who may be able to benefit from that treatment. However that approach is a consequence of an important principle that the NHS should value all lives equally. That means valuing the life of the patient who is not immediately in front of a doctor on an equal basis to the patient who is seeking treatment.

But this type of resource based decision making rarely happens in the NHS. The NHS continues to spend our money in ways that deliver less healthcare benefit than it could.

Let me explain by way of some examples. There has been a wide professional consensus for at least a decade that the NHS is spending too much on too many hospital buildings that the NHS cannot afford. There is an urgent need to transfer funding to community based services. However in England, 10.55% of the NHS budget was spent on general practice in 2004-2005. By 2011-2012, this had fallen to 8.5% and last year dropped to 8.39%  even though this represents 92% of patient encounters within the NHS. So policy says one thing but the “payment by results” system we have for funding NHS hospitals does not deliver the policy outcomes.

Secondly, as Dr Ben Goldacre has demonstrated by his brilliant writing which is both informed and readable (See for example the text on Midodrine at pages 138ff of Bad Pharma by Dr Ben Goldacre (2012) Harper Collins), healthcare systems around the world, including the NHS, are failing to reduce spending on drug treatments that do not work due to a combination of commercial interests. Despite that the pressure to spend more on drugs of dubious efficacy grows each year and investment in hospital buildings is forever increasing, even though the inevitable result is a reduction in the level of resources available to the community.

For this evening, I am not so much interested in whether the NHS fails to make change where the evidence suggests that better use of NHS resources could deliver better outcomes for patients but why the NHS fails to take these decisions.

The “why” is – I would suggest – much more interesting than the “whether”.   Any analysis of the mechanisms for change in the NHS must start with asking “who are the decision makers” for these key decisions?

The NHS has been divided into commissioners and providers for over 20 years (Since the NHS and Community Care Act 1990 was brought into force in April 1993). With a few exceptions, such as drugs which have a NICE Technology Appraisal Guidance for patients within defined clinical cohorts (Regulation 4(2) of the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012), NHS commissioners have a wide area of discretion to decide what services to commission on behalf of NHS patients. Local Clinical Commissioning Groups and, for specialised services and primary care, NHS England have a wide discretion to decide what services should be commissioned for patients as part of NHS funded healthcare. They have extensive duties to involve patients in their decision making but, subject to that, they are the bodies that decide who gets what medical drugs. They decide whether to commission – i.e. pay for – an A & E at the local hospital, how community services should be organised and how nearly all of the local NHS is to be set up. However the GP contract has not historically placed limits on the drugs GPs can prescribe for their patients.

Subject to this constraint, the legal position in the NHS is reasonably clear. The fact that a medical intervention is likely to be clinically effective for a patient or even safe the patient’s life places no duty on the commissioners to fund that treatment for a patient (R (On the Application Of Condliff) v North Staffordshire Primary Care Trust [2011] EWCA Civ 910). CCGs are entitled to work out where their priorities lie and how the NHS funds will be spent.

But my experience is that local NHS commissioners remain very timid about making changes to the services they commission. It would be easy to say that changes to NHS services are delayed for fear of upsetting politicians who fear not being re-elected. But actually there is a more serious problem.

The real problem – I suggest – is that the concept that the “NHS is free at the point of use” is translated by the public into “NHS care should not be constrained by money”.

Despite the recognition in other areas of public services that the “cloth must be cut”, when it comes to the NHS there remains a measure of disconnect between the money that people pay in their taxes to support the NHS and the quality of service that taxpayers expect to receive. This feeling that “we cannot say it’s about the money” makes it very difficult for those concerned with NHS reform to have a sensible dialogue with the public.

I cannot count the number of times that I have read NHS consultation documents which try to pretend that proposed changes to NHS services are only all about improving the quality of services as if the issue of money and resources was irrelevant. In contrast the internal documents leading to the proposals make it abundantly clear that the drivers for change are a desire to deliver the best quality of services within the financial and human resources available.

But NHS managers are not alone because this disconnect does not just exist in the UK. Professor (and Doctor) Greg Bloche has accurately said that “withholding beneficial care to control costs is a radioactive proposition in American politics”.   Tea party darling Congresswoman Michelle Bauchmann said the proposition that doctors should take account of the cost of treatment was “an horrific notion to our nation’s doctors [and] to each American”.

However if – in my anecdotal experience – NHS managers are asked “why” they are colluding with the idea that changes to NHS services are not about making the best use of available resources, legal problems are often cited as a reason. In fact, I would suggest that the opposite is the case. The approach of the courts actively recognises and supports the need to ration health along with other public services.

In contrast to the political rhetoric, the courts in both the UK and in the United States have accepted that rationing is part of the healthcare delivery business in both the public and private sector. The Supreme Court has approved healthcare rationing and supported paying doctors to ration care. In Pegram v Herdrich the US Supreme Court said “.. no HMO organisation could survive without some incentive connecting physician reward with treatment rationing”. The Court of Appeal in this country has repeatedly held that it is lawful for the NHS to ration access to healthcare. As long ago as 1997 Lord Bingham said in R v Cambridge Health Authority ex parte B ([1995] 1 WLR 898):

“I have no doubt that in a perfect world any treatment which a patient, or a patient’s family, sought would be provided if doctors were willing to give it, no matter how much it costs, particularly when a life was potentially at stake. It would however, in my view, be shutting one’s eyes to the real world if the court were to proceed on the basis that we do live in such a world. It is common knowledge that health authorities of all kinds are constantly pressed to make ends meet…. Difficult and agonising judgments have to be made as to how a limited budget is best allocated to the maximum advantage of the maximum number of patients. That is not a judgment which the court can make. In my judgment, it is not something that a health authority such as this authority can be fairly criticised for not advancing before the court.”

That approach has recently been approved in a series of recent decisions, including R (Condliff) v North Staffordshire PCT  ([2011] HRLR 38, a case in which I appeared for the NHS body.)which decided that the human rights of the patient under article 8 of the ECHR were rarely if ever engaged in medical rationing treatment decisions.

Further commissioning decisions are public law decisions. The House of Lords has held that, save in a case where it is misfeasance in public office with its incredibly high hurdles including showing malice, NHS commissioners cannot be sued for damages for public law decisions (O’Rourke v Camden LBC [1988] AC 188). Hence, at least in the UK, it is not legal constraints that hold back NHS reform.

So I return to the central problem which – as a non-doctor I diagnose as – there has been a fear amongst NHS leaders that the NHS is a public service where the public do not have an appetite for reform. Those who make decisions about public services rightly feel themselves to be accountable to the public for these decisions and, at present, fear the public have no mood to accept the types of reform that are essential if the NHS is to achieve its twin objectives of (a) delivering the best care it reasonably can to vulnerable patients and (b) remaining within a largely static budget. The losers from this state of affairs are vulnerable patients who don’t get the treatment they need because it is spent on treatment that does not work, on hospitals that are not justifiable or services of marginal benefit.

But perhaps we are at a tipping point. The in-coming NHS England Chief Executive, Simon Stevens, said last week that NHS England wanted local CCGs to come up with sustainable and future proofed local health systems, and then tellingly said:

“If you’re going to get a sustainable and future proofed local health system, what are the longstanding assumptions and constraints we’d need to say goodbye to?”

The second reason we might be at a tipping point is finance. The NHS is facing a funding gap in the next few years up to 2021 of between £30Bn and £12Bn depending on whose estimate you accept. As the Kings Fund said in their impressive interim report “A new settlement for health and social care” published in the last few weeks:

“.. the NHS faces a severe and continued financial challenge …. there are some intense short-term pressures to be dealt with and some long hard term and unavoidable choices ahead”

The NHS has had an expanding budget for almost all of its life, but that luxury is no longer going to be available.

The third reason that changes need to be made is demographic. Everyone knows that we are getting older as a nation, and our services need to be organised to deliver care for the next generation rather than the last generation. But we also have far more people with long term conditions surviving into adulthood. Barely half social care spending is spent on people over the age of 65 (Kings Fund Report at page 12)  and there are more people under the age of 65 with 2 or more serious long term medical conditions than those over the age of 65. The Better Care Fund will kick in in 2015 to tie resources to better integration of health and social care, leaving much less in the NHS kitty for traditional acute care.

So why when there is an impeccable health economics case for change in NHS services, is there no public appetite for that change? That is not a straightforward question. Nigel Lawson observed that “the NHS is the closest thing the English have to a religion”. Yet, as with all religions, informed debate is clouded by myths.

The first myth is that the problems of the NHS could be solved with more money. Spending on the NHS rose 7 fold between 1949 and 2002 (allowing for inflation) and has continued to rise since then. More money might delay difficult decisions or cushion the fall, but more money of itself is not the answer. A high proportion of NHS acute care is provided to the frail elderly and, with an aging population, we need maybe 4/5% additional resources each year to carry on delivering the same level of services to our population. Although numbers of patients attending A & E are not rising dramatically, an NHS England report noted:

“There were 10.6% more emergency admissions in 2012/13 than in 2009/10. There is general consensus (though it is hard to identify the evidence) that patients presenting are more ill and hence more likely to need admission and have longer stays”

New, expensive drugs are coming off the pharmaceutical production line every year, offering marginal improvements on existing drugs but at a much higher cost. I could go on but please be assured that we can never spend “enough” on healthcare because the more we spend, the more demand there will be for state funded healthcare.

The second myth is that investment in the NHS is the best way to improve the nation’s health. Sorry but this is just not true. According to the WHO, around 80% of deaths from the major diseases, such as cancer, are attributable to lifestyle risk factors such as excess alcohol, smoking, lack of physical activity and poor diet.   Extra spending on medical treatment for people with preventable diseases is not top of the list of effective interventions. So if we care about the health of our people, extra spending on the NHS is not necessarily the right answer. It may be on rare occasions but prevention is better than cure.

The third myth is that the NHS equates to hospitals, and that the NHS delivers most of its care in hospitals. This is also simply not true. 92% of NHS care is delivered by GPs or in the community.   A significant proportion of NHS money is spent on managing people with long term conditions. However most of this case is or should be delivered outside a hospital setting. And the paradox is that the better that long term conditions such as COPD or diabetes are managed in the community, the less unplanned care has to be provided in hospitals.

But the NHS only really makes savings if it closes or substantially scales back hospital buildings. Removing one service from the acute sector but leaving the building and staff in place will simply result in those staff delivering care in those buildings to other groups of patients, with little if any overall saving.

These “myths” have made it virtually impossible to have a sensible discussion about what drugs or medical treatments the NHS should fund and how we should change the footprint of NHS buildings to get better value for money. We have NICE in the UK and US has the Patient Centred Outcomes Research Institute. But they are underfunded, dominated by supplier interests and can only scratch the surface of the rationing debate.

A nationally set list of drugs and treatments that are funded and not funded across the whole of the NHS is probably an expensive paperchase that will get nowhere apart from endless legal challenges. As the Kings Fund Report noted:

“Experiences from New Zealand, Chile, the US state of Oregon, Spain, Israel and Germany are not encouraging. There have been problems over enforcement and perverse outcomes in some cases. One of the best-known attempts to ration care was the Oregon approach that ranked treatments by priority and then set a cut off decided by the budget available. It led to treatable cancer being excluded from the benefits package”

That approach is, in any event, a non-starter in a system where politicians are the ultimate decision makers. The line “this was a locally made decision” has been seen as essential to insulate our politicians from disappointed patients.

It is an uncomfortable truth that, in a modern democracy, politicians are only able to “do politics” in the space in which public opinion allows them to operate. Politicians rarely lead public debate outside that legitimate area of public opinion and then they are described by the Sir Humphreys as being “brave, Minister”, with all its connotations of a lack of electability.

So who can move the space for public debate about change in the NHS? The answer is that there are many candidates and some are stepping up to the plate. This is the classic area where NHS England have the chance to lead – and their independence from government precisely creates the space that allows them to flourish. Special credit must go to NHS England’s medical director, Sir Bruce Keogh, for his work on the future shape of Accident and Emergency services even though NHS England is, of course, not the primary decision maker for commissioning these services. I may have disagreed with him about Lewisham but overall he has been brave on the future shape of A & E care.

The Medical Royal Colleges have a key role to play, as to academics those who work with the NHS on a daily basis in fora such as this.

And now – ladies and gentleman – I get on my soapbox and make no apologies for it.  This essential debate is most important at the local level because, in a federated service like the NHS, delivering change is a bottom up process. That means the local NHS leaders – which primarily after the Health and Social Care Act 2012 means the GPs who sit on the local Clinical Commissioning Groups – have to make the case for change locally.

And that cannot happen unless those who make NHS decisions locally invest far more time, energy and resources in educating the public about the choices that need to be made and actively lead local debate.

Local NHS leaders need to explain some home truths as opposed to colluding in the myth that health is too important to be about money. If my treatment, my A & E unit or my maternity unit is allowed to be seen to be too important to allow money to be mentioned, it is someone else’s elderly care services, mental health services or respite care that will pay the price.   Taking on the role of being a local commissioner means that these GPs have to shout loudly that not every cancer drug can be financed, not every small A & E unit should remain open and many community hospitals are totally uneconomic.   It is their job to drive local public debate in order to counter the myths of objectors waving shrouds.

To date the role of being the “big bad wolf” who cuts A & E or maternity units has been left to faceless NHS managers and the occasional brave public health doctor, or even worse accountants within the Trust Special Administrator process. But the financial challenges facing the NHS are now so vast and so close that the NHS has an urgent need to move services into the community in order to support the growing elderly population. These challenges are urgent and the NHS needs unprecedented levels of structural change.

As a lawyer you would expect me to end with the law. The legal duties on commissioners under the NHS Act require every part of the NHS to engage with patients but in particular local CCGs. NHS managers have, by and large, been rubbish at genuine patient engagement, often because it is an afterthought. The traditional NHS way is to make reconfiguration or drug rationing decisions first and then consult the public afterwards. Not only is this now unlawful due to the wide duties under section 14Z2 of the NHS Act 2006, it shows a short-sighted approach to the local politics and leads terrible decision making because supplier interests dominate the decision making process.

The public will only believe change is needed if they are trusted with all the data, and all of the options are openly debated at an early stage. But they also need to be repeatedly told as part of that consultation process that “we can only spend the money once”. To give credit, NHS England is trying hard to lead debate but the real debate needs to be led at a local level. The job of GP commissioners is to be community leaders for change. It means facing the local press and the radio, and crucially getting into the debate ring with the vested interests, including aspirant politicians, who are well-financed and will fight dirty. NHS commissioners need to fight back, holding on to the moral high ground at all costs and exposing the real costs of the choices that need to be made.

If the local NHS does not invest in and lead public debate, political “space” will never be created to give politicians the opportunity to do the right thing. It’s a public service and commissioners must engage with the public – the great unwashed as they were referred to in previous generations.

If local commissioners do not lead the debate on the reasons for NHS changes, elected politicians will have to oppose clinically required change. That will slow the change process or even prevent change happening.   And the losers will be those with mental health conditions, those suffering from chronic conditions and the frail elderly patients who don’t get the services they need because they are still being wasted on too drugs of marginal benefit and too many hospital buildings.

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[8] See Regulation 4(2) of the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012.

 

This article was first published on David Lock’s blog

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