Category Archives: Democracy

Democratic control of NHS

First appeared in www.opendemocracy.net/ournhs  on 25 June 2018

If you want to make sure your medical data isn’t shared with third parties for unknown purposes, you may need to take action now. Here’s why – and how.

Image: Yuri Samoilov/Flickr, CCBY licence.

If you happen to visit your doctor in the next few weeks, you may (or may not) spot a new poster or leaflet; they are NHS blue, with a yellow stripe at the bottom, headlined “Your Data Matters to the NHS”. Like all those e-mails you’ve been receiving asking you to opt in to receiving marketing, the poster and leaflet has been prompted by GDPR – but it’s about something rather different, and the choice you are being offered is an opt out, not an opt in.

Simply put, if you have concerns about what’s being done with your medical records – who is getting access to them, and how are they being used – you have the right to opt out of uses of your own health information for purposes beyond your individual care.

This ‘new’ National Data Opt-out that you may (or may not) hear of is in fact based on one of the old care.data opt-outs, formerly known to doctors and Government as a ‘Type 2’, renamed so that – by 2020, we are told – care providers all across the NHS and care system will be able to see and honour your consent choice about what happens to your medical data.

Great, in theory. But in practice?

If you do see the poster, and follow the link – it’s nhs.uk/your-nhs-data-matters/ – you’re told you can exercise your right to choose using a new ‘digital’ opt out process. Unfortunately, NHS Digital’s new process ignores the reality of many patients’ lives and – despite Government digital guidelines – fails to serve families, or the most vulnerable. So much for bridging the digital divide, and reaching the ‘furthest first’…

Notably, too, if your family has children under the age of 13, or if you look after a dependent older relative, then things are even more complicated. Rather than giving a simple instruction to your doctor, those who would prefer their children’s data wasn’t sold to third parties for unknown purposes, will be required to send to NHS Digital, by post, four pieces of ID and documentation along with a seven-page form. So much for Jeremy Hunt’s much-vaunted commitment to a ‘paperless’ NHS

So much for the process – what then happens to your information?

The poster and leaflet go on to say:

In May 2018, the strict rules about how this data can and cannot be used were strengthened. The NHS is committed to keeping patient information safe and always being clear about how it is used.”

You only have to look at (our slightly more readable version of) NHS Digital’s Data Release Register at TheySoldItAnyway.com to see that little substantive has changed in practice.

NHS patients’ data is still being sold to a variety of customers – including for-profit ‘information intermediaries’ which continue to serve commercial customers of their own, including pharmaceutical marketers and private providers.

The law, however, has changed.

As of May 23rd, the UK has a new Data Protection Act 2018 – replacing the expired 1998 Act and bringing the provisions of GDPR into UK law.

NHS Digital, however, holds itself to the Information Commissioner’s old, pre-GDPR, non-statutory Code of Practice on Anonymisation – claiming this allows it to continue to ignore 1.4 million patients’ opt-outs, as it carries on selling ‘Hospital Episode Statistics’ data.

This approach has passed its sell by date; GDPR provides a wider definition of what is ‘identifiable’ data – i.e. data that can be used, including by combining it with other sources of data, to identify individuals, even if supposedly anonymised. UK law agrees with this wider definition, at least in theory – and both GDPR and our new Data Protection Act agree that any information about a person’s physical or mental health is sensitive personal data, and requires additional protections.

Given that ‘Hospital Episode Statistics’ (HES) consists of ‘patient-level’ lifelong medical histories – each row in the data referring to a single person, with every individually-dated hospital event they experienced linked together using a ‘pseudonym’, and containing many other items of data that can act as ‘identifiers’ – it can count as ‘identifiable’ data under the new law and therefore also sensitive personal data, as medConfidential and others have been saying for years – although confusion over the new laws seems to have stretched to the top of NHS Digital, and discussions are ongoing.

Why does this matter? Your medical history is like a fingerprint – unique to you, and identifiable by almost trivial means: a mother with two children is over 99% likely to be identifiable from their children’s birth dates alone, and a single news report could provide the information required to identify the unfortunate subject’s entire hospital history. A single breach of HES could expose millions of patients’ hospital histories, a disaster orders of magnitude greater than the loss of the HMRC Child Benefit discs in 2009.

This also means that, as of May 25th, any customer of NHS Digital receiving full copies of HES is now handling identifiable, sensitive personal data – so if any patient’s opt-out is not being honoured (i.e. if their row of data is not being removed from HES) then, once again, NHS patients are being lied to. You can check for yourself the lists of organisations with projects that ignored opt outs, and those that honoured them, at TheySoldItAnyway.com.

Aside from the posters and leaflets, some patients are being written to directly. But only those who already opted out – clearly NHS England is content, as it was in 2014, for large parts of the rest of the population to remain in the dark. (While NHS Digital must write to those patients who opted out already, it is NHS England’s responsibility to communicate with everyone else.)

Is what patients are told true? The opt-out should apply to all identifiable data; is that what NHS Digital is doing?

NHS England is looking to “empower the patient” by giving already empowered patients marginally more, while ensuring it remains accountable to no-one. For example, aside from “research and planning” uses, how does NHS England itself use data? And can a patient see the list?

medConfidential works to ensure every use of patients’ data is consensual, safe, and transparent. Unlike NHS Digital, NHS England has largely avoided writing down who does what with patients’ data and why, and because of that has accumulated a massive transparency backlog. Though they go beyond research and planning, NHS England’s current uses are likely (almost) all legal – but it can’t explain how, and some of its proposed future uses are still obscure.

medConfidential believes there need be no conflict between good research, good ethics and good medical care; indeed we are enthusiasts of lawful, ethical medical research. By and large, the standards researchers have to meet mean their use of NHS patients’ data already meet GDPR requirements – the paperwork they have to fill in has helped in that.

Commercial deals

Many people have concerns about private companies doing data processing for the NHS; cases such as the illegal deal between Google DeepMind and the Royal Free Hospital suggest some caution is justified. The most toxic problem, however, remains commercial reuse by ‘information intermediaries’ – some of which appear in the list of organisations that have breached not only their contracts with NHS, but existing data protection law.

Promises about the NHS “always being clear about how [patient information] is used” (that poster again…) ring somewhat hollow, while for-profit companies continue using contractual agreements with the NHS as a figleaf to do work for commercial customers such as Pharma marketers who – despite promises elsewhere that patient information won’t be used for “marketing purposes” – use the information to market to doctors.

Patients should know how their information is used if they are to make an informed choice. ‘Your NHS Data Matters’ provides some information about this, but omits some of the more unpalatable truths about what is happening – undermining the important promises it makes.

If after checking what the NHS says and what it does, you do have concerns, medConfidential suggests you opt out now. Opting out will not affect your individual care, and you can always opt in later – e.g. when you are satisfied proper protections are in place.

If you use medConfidential’s opt-out form, your GP data will be covered as well as your hospital data.

About the author

Phil Booth co-ordinates medConfidential – campaigning for medical data privacy. For more on how the changes will affect your medical records, visit medConfidential’s ongoing ‘masterclass’ blog series.

 

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Abdallah al-Qutati: Family and colleagues of third paramedic killed in Gaza speak out

In Medical Aid for Palestinians (MAP)’s latest film, the family, colleagues and friends of 22-year-old first responder Abdallah al-Qutati, who was shot dead by Israeli forces last week, speak out about the circumstances of his killing and their demands for protection and accountability. Abdallah was the third health worker to be killed in Gaza since 30 March.

According to the World Health Organization (WHO), Abdallah was volunteering with a team called ‘Nabd Al-Hayat’ (Life’s Pulse), providing first aid treatment and evacuation for injured demonstrators.

Abdallah was fatally shot on Friday 10 August while providing care to a man who had been shot by Israeli forces during the “Great March of Return” demonstrations east of Rafah, south Gaza. Abdallah was taken to the European Gaza Hospital, where he was pronounced dead. The injured man he was treating, Ali al-Alul, also later died.

In the film, Abdallah’s brother, Mohammed, calls for accountability for his brother’s killing:

Abdallah was performing a humanitarian job. He didn’t hold a gun. He was not a militant, nor a terrorist. He had medical solution and gauze to help the injured. This is a war crime. They must be held accountable in front of the world”.

On the day that Abdallah was killed, there were at least five attacks on healthcare in Gaza in which five health workers were injured in addition to Abdallah and an ambulance was damaged. More than 200 such incidents have been recorded by the WHO since 30 March, with three health workers killed and 379 injured. Sixty-one health vehicles and two health facilities – a specialised centre for people with disabilities and the Ministry of Health central ambulance station – have also been damaged.

Take action

Attacks on healthcare have impacts far beyond the initial pain and harm. They reduce the capacity of the Palestinian health system to adequately care for the population, particularly during emergencies, and therefore undermine Palestinians’ right to health in the long-term.

Failing to ensure accountability for these violations increases the likelihood of recurrence and further erodes the international norms which ensure the protection of health professionals and infrastructure in conflicts around the world.

MAP is calling on the UK and other governments to take action to protect and support Palestinian health workers in Gaza. If you are in the UK, you can sign our petition using the link below:

Sign our petition

 

Credits: Producer and Editor-Halla Alsafadi and Footage-Mohammed Mubayyed

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

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

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

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

We shall be putting out more info shortly about this.

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jenny Shepherd said

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

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

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

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

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

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

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

Steven Carne emphasised,

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

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

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

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On 11 June 2018 the Common’s Health and Social Care Committee published the result of their inquiry into Integrated Care: organisations, partnerships and systems 

Anyone who observes Sarah Wollaston will notice that from time to time she confounds expectations and raises concerns about what her party is doing in government, notably on her strongly worded letters to the Home Office on the treatment of immigrants within the NHS. Although her voting record shows a reluctance to translate strong statements into protest in the division lobby. There was, therefore, a glimmer of hope over her chairing of the committee when she insisted to Jeremy Hunt that the ACO process should be subject to full and proper consultation – to ensure that it complies with the law.  

During the long process of privatising the NHS, there have been moments when the tide could have turned or at least the process could have been exposed to proper evaluation. The greatest and possibly the most disappointing of these moments was the pause before the implementation of the Health and Social Care Act 2012.   

Could Sarah Wollaston’s committee have provided one of these moments? Possibly, but it didn’t. It has failed on every count. 

  1. It was framed to deceive 

The report summary says, ‘Whilst there is not sufficient evidence that integrated care saves money or improves outcomes in the short term, there are other compelling reasons to believe it is worthwhile.,There have been positive early signs from the new care models about the benefits more integrated health and care services can bring to patients. 

It goes on, ‘understanding of these changes has been hampered by poor communication …confusing acronym… poorly understood fuelled a climate of suspicion and missed opportunities to build goodwill for the co-design of local systems that work more effectively in the best interests of those who depend on services. 

The summary sets out the terms of reference for the report. It suggests to the reader that what is in the body of the document is compelling evidence. It states that there are positive benefits from the system they have examined. And finally, it implies a dismissal of the concerns of campaigners on the basis that they are ill founded. It makes clear that such opposition can only arise from misunderstanding and the cumulative effect of those misunderstandings has been harm to patient care which a proper implementation would have had high on its own agenda. 

  1. It had a discriminatory attitude to its participants 

There were two Professors of note in the Inquiry whose qualifications and expertise should have given them considerable weight, coming as they did from opposite sides of the divide on this issue. 

Professor Chris Ham (along with his colleague Anna Charles) of The King’s Fund was a specialist advisor to the inquiry and the report declares his interests, ‘The King’s Fund is working to support Accountable Care Systems in England and some of the money for this work has been provided by NHS England’.   

Chris Ham advised both New Labour and the Tories on Integrated Care. When New Labour ran its NHS Kaiser Beacon projects in 2003 he had a dual role both as advisor to the health department and academic assessor of the outcomes of the project. He is now the CEO of The King’s Fund. The Fund promotes Kaiser Permanente and its work as a role model for integrated care. He was also a key witness to the committee. Chris Ham was awarded a CBE in the June 2018 Birthday Honours List for services to the NHS.  

Professor Allyson Pollock is the co-author of the NHS Reinstatement Bill and one of the claimants in the judicial review JR4NHS. She has been a consultant in Public Health medicine since 1986, has headed up Public Health Policy units at various prestigious universities and has served on the council of the British Medical Association. Her early work analysing the Private Finance Initiative exposed many of the flaws in the process which have since been accepted as standard. Her work lies in the realm of protecting the NHS as a public service.  

When Simon Stevens gave his oral evidence, he was asked by committee member Luciana Berger about the risk of increasing privatisation in the NHS. He had prepared a response which included printed out articles by Allyson Pollock. Rather than addressing the current situation and any implications there might be for privatisation he simply chose to attack Allyson Pollock’s work personally. He refers to an article on Privatisation and Americanisation in the NHS. He uses the fact that Allyson has been writing continuously and has been monitoring the incremental steps towards privatisation as evidence that she is wrong.  

He subsequently says, It is absolutely crucial that NHS care remains free and based on the needs of patients rather than ability to pay. There is nothing that has been proposed about the ability to join up the way health and social care services work that was not established by Parliament as far back as 2006, and in other places that has been working perfectly satisfactorily.”  

He goes so far as to say, If Nye Bevan were sitting here now, I think he would be a strong advocate for the kind of integrated care systems and combined funding streams we are talking about.” 

Whether or not the service is currently or historically working satisfactorily is not a rebuttal of whether or not it is being privatised. However, the report includes in section 40 a warning against removing choice and competition, ‘there is a danger of creating airless rooms in which you simply have one provider who is there for a huge amount of time. That clause is a statement against the basic principle of a publicly owned, publicly provided and publicly managed NHS. 

One member of the committee Andrew Selous MP spoke at the 23 April debate in Westminster Hall on privatisation. In the oral evidence session with Simon Stevens Andrew Selous asked the first question which was, “If we can have in our minds a lady in her mid‑80s, with a number of long‑term conditions, perhaps living on her own with her family around the country, could you explain as clearly as you can how the changes you are making will improve care for this elderly lady in her mid‑80s living on her own?” This reference is to ‘Mrs Smith’, a fictional character used by Chris Ham in his analysis of the Torbay NHS Kaiser Permanente Beacon project. 

In the privatisation debate Andrew Selous praised Chris Ham as an independent expert on the NHS. By contrast he referred to Allyson Pollock as well-meaning but misguided and used Simon Stevens’ attack on her as evidence of her lack of credibility. It’s a distinction which is woven through the report and embedded in the framing: the supportive and friendly witness is, by definition, independent, authoritative, expert; the critics, on the other hand, know not of what they speak, are misguided and misinformed. What concerns they have is portrayed as the result of poor information management and a mistaken attempt on behalf of NHS England and the STP leaders to keep plans out of the public domain until they are completed.  

There is a high-level of cognitive dissonance over this issue as the report fails to infer from the secrecy, leaks and cuts that there is a sound and rational basis for concern. For example, they accept [Section 60], ‘In the run up to the final deadline coverage about the secrecy of plans continued and was accompanied by reports of plans were leaked to the press, in which the focus of the coverage was on proposals to close services, reduce bed capacity and reconfigure hospitals. The STP brand as a consequence was politicised. Chris Ham said, “sadly STPs got off to a very bad start, a very difficult start because of that.  

An inquiry should surely legitimise those questions not seek to undermine them. It may disagree with them and may give good reason for disagreeing but for committee members to publicly cast doubt on the professionalism, expertise and authority of that legitimate challenge is unacceptable. 

  1. It was highly selective in its evidence and timid in its conclusions 

The call for written evidence was based on the committee’s previous inquiry which had been scheduled to take place before the General Election was called in 2017. The original inquiry asked whether Sustainability and Transformation Plans (STP) were working but by the time the committee heard the oral evidence the name of the inquiry had been changed and questions focused on the benefits of integrated care and the practical steps needed to implement it.  

The Royal College of Emergency Medicine, representing one of the areas most significantly affected by the Five Year Forward View and all its subsequent manifestations, put in a written submission which not only challenged the evidence on which the assumptions for changed were based but also were highly critical of the language used in such consultation as had taken place.  

Several submissions came from NW London, where the four local councils organised an independent review into the changes in their area in 2015. Their highest priority was where the cuts were falling and what impact it was having on communities with high levels of deprivation. The submission from Hammersmith and Fulham Council itself was particularly strongly worded, calling the consultation ‘stage-managed’, ‘tokenistic’ and ‘geared towards achieving a set outcome’. They go so far as to state that what has been done actually ‘flies in the face of evidence and feedback received from social care providers’. 

With this background the Committee had little choice but to include some campaigners and challengers to the process to give oral evidence. Tony O’Sullivan from KONP gave examples from his own work of what integrating services really means and how they take a long time and dedicated work to achieve. It bears little resemblance to the top-down organisational and budget merging of ‘Integrated Care’. Allyson Pollock argued on the technical details of accountability and the legal framework.  

Although the terms of reference nominally remained the same, the direction of questioning at the oral sessions was undoubtedly pointed more towards whether integration was a good thing and how it could be made to work rather than examining the problems of the STP process.  

The inquiry sets out its stall as having the patient at its heart. Yet most of this evidence is absent from its report. The concerns arising from the written submissions was largely dealt with under conclusions such as this in section 64:  

STPs got off to a poor start. The short timeframe to produce plans limited opportunities for meaningful public and staff engagement and the ability of local areas to collect robust evidence to support their proposals. Poor consultation, communication and financial constraints have fuelled concerns that STPs were secret plans and a vehicle for cuts. These negative perceptions tarnished the reputation of STPs and continue to impede progress on the ground. National bodies’ initial mismanagement of the process, including misguided instructions not to be sharing plans, made it very difficult for local areas to explain the case for change. 

The oral evidence was dealt with in a more tortured and convoluted way. The report is a mass of contradictions. Far from presenting ‘compelling evidence’ it trips over itself trying to avoid the evidence staring it in the face:  

  • They agree with Allyson Pollock that ACOs need primary legislation. But they would like to trial a few first – how can a trial be run of accountable bodies which need primary legislation, without the legislation?  
  • They agree that the success of integration depends on the strength of local inter-disciplinary working, but accept that the 44 ‘footprints’ which are the boundaries of the Sustainability and Transformation Partnerships are not all well drawn and leave areas incoherent. They make no recommendation to address this.  
  • They accept the need to address the NHS’ financial constraints then admit there is no evidence integrated care does this. Indeed, far from being compelling, the evidence gives their claims the flimsiest of support. 

As an extraordinary rider to the Inquiry’s title change the report effectively dismisses the STPs as no longer having any relevance, notwithstanding the amount of money that has been spent on them and that they were a critical step in the implementation of the 5 Year Forward View. Section 92 says that the Partnerships which have succeeded them are ‘fragile’ and must not (be) overburden(ed) by increasingly making them the default footprint for the delivery of national policies’ despite that being precisely their purpose. 

In short, these contradictions, inconsistencies and timidity means it ends up as a report of no consequence. It tries not to offend but to our mind it fails even that very limited objective. Indeed, there are times when it is hard to supress a laugh as the report says, time and time again, that there is no evidence in support of this plan – but they support it anyway. 

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We like to think that we own our NHS.  It’s a public service.  If we do own it, then the joke is on us.  The NHS is now an unaccountable secretive mess and our interests are not being protected.  The people tasked with looking after our interests are bullied or manipulated into amnesia.

We are supposed to have the most open and transparent health service in the world, pause here for prolonged laughter.  What we have is a howling mess with providers behaving like autonomous private companies and claiming commercial confidentiality over everything; meeting in private to keep things secret.

We have CCGs that commission £billions of services but have no accountability to the public they serve and who keep their business as private as they can.  They are even trying in some places, Staffordshire and Cambridge as examples, to evade all responsibility by transferring their responsibilities by contracting them out.  The next wheeze might now be Accountable Care Organisations (that could be private companies) and which have no accountability yet hold long term contracts to plan commission and deliver NHS services.  This is wrong.

We had the whole NHS being divided into 44 planning areas with Sustainability and Transformation Plans, making a brave attempt to overcome the chaos in the NHS caused by the dreadful Lansley Health and Social Care Act.  Most of these STPs came out without any semblance of consultation with the public, patients or staff or even with the local authorities they were supposed to have included.  Hardly a day goes by without some new idea for some new body yet none of them look like something we would be able to hold to account.

We have NHS bodies which are supposed to be public and which are paid through public funds behaving like the worst in the private sector.  There was the legendary Strategic Projects Team spending years advising on half baked schemes to privatise services, all of which failed.  The award winning SPT, set up initially to manage the Circle deal in Hinchingbrooke went from failure to failure but was never held to account.  A proper record of what they did and on what authority will never be made public, good luck with any FoI request.

QE Facilities

Now we have the new SPT – QE Facilities.  Again, an NHS body, again with insider status, going around the country charging Trusts for advising them about how to evade VAT by setting up a wholly owned company.  This publicly owned company has just refused an FoI request to list those Trusts it has spoken to.  This is commercially confidential – we are not allowed to know if one part of the public sector has spoken to another part.

The saga of forming wholly owned companies to avoid VAT has been the latest stain on the NHS.  Boards have gone down this route in secret, refusing to engage with the hundreds of staff involved – who will move out of the NHS.  They make public claims about improving services which are wholly untrue – their own figures show all the savings come from tax changes and service improvement does not feature.  They refuse to provide documents, meet in secret and refuse even to consult with their alleged partners in their local STP.

This behaviour by Foundation Trusts who do not even bother to involve their own Governors ( as they are not trusted) probably signals the end of the experiment with trying to get public bodies to behave like private companies.

These are the same Trusts that sign up to Sustainability (all the Transformation plan money has been nicked) Plans that are not sustainable and to control totals they know they have no chance of achieving.  We live in the fantasy world where Boards are too weak to say no, they just play the game.  Since almost every other Trust is in some kind of trouble retribution is unlikely.

Of course all this is in part a reaction to the absurdity that the legislative background is totally incoherent and is being largely ignored.  Yes, there are examples of people coming together and trying to do their best for patients by trying new ways of working.  All good.  But none of this gets us anywhere unless we make the funding available to make sustainable changes possible.  We get nowhere without decent workforce planning.  We fail if we don’t address the yawning gap in accountability.

We will fail unless we get better Boards that tell the trust not just to power but to their own staff!

As waiting lists grow and cancellations increase satisfaction with the NHS is beginning to fall; more people are opting to spot purchase private care, the clear signs of a system in deep trouble.

So if we are the owners how do we get our say?

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Instead of Accountable Care Organisations

The NHS in England is being reorganised, yet again. Jeremy Hunt and his advisors have decided to turn upside down their own previous reforms. Now commissioning organisations (CCGs) and service providers (NHS Trusts) will be brought together into large Accountable Care Organisations (ACOs). How this will work in practice is not clear and rightly there have been calls in Parliament to scrutinise the changes. A coalition of health campaigners, including Stephen Hawking, are also trying to take the Government to court to stop these plans.

In one minimal respect these changes are positive, for they could mark the end of the era of the internal market and commissioning. The Government’s austerity programme and the cuts, not just to the NHS, but in particular to social care, have further undermined the ‘purchaser-provider split’ and the complex tariff arrangements that are used to fund NHS service provision. Now, as demand rises, and real funding falls, it makes no sense to continue with this pseudo-market model, one that has dominated the NHS since 1992.

However the threat of continuing privatisation to the NHS continues. In fact the term ACO is an American term which is used to describe an insurance-based model for funding healthcare, one which is generally associated with low quality and highly rationed care. It is entirely feasible that the NHS is being parcelled up into large chunks which can then be taken-over by US companies for profit. Even if this does not happen immediately there is every sign that these new arrangements will worsen the quality of the NHS:

  • Even more privatisation, for larger contracts, won by larger profit-making corporations
  • Even more rationing according to bureaucratic tick-box systems
  • Even less connection to local communities and people
  • Even more centralisation of money and jobs in fewer places

Even if ACOs are not privatised they are certainly likely to adopt the kind of heartless rationing and contracting systems adopted by US companies to control costs. They will be so out of touch with real communities that anything more human or positive is not available to them.

Inevitably central government will try to reassure the public that they do not intend to do any of these things. They will likely talk about ‘working in partnership with local communities’, increased ‘personalisation’, ‘asset-based approaches’ and addressing the ‘social determinants’ of health. But, after seven years of austerity and regressive social policies none of these reassurances are remotely credible. Taking money, power and authority away from local communities and away from local government will only reduce local influence on the NHS. Austerity is a policy of central government and further centralising the NHS further will only make things worse.

Despite the lack of any clear democratic mandate, any clear policy and any legislation, there remains considerable momentum behind the drive from Whitehall to reorganise existing NHS organisations into ACOs.

So this short paper tries to offer some provisional answers to just two questions:

  1. What should we do in the short-run to resist these changes?
  2. What kind of new arrangements should we seek in the medium and long-term?

Urgent next steps

The first urgent priority must be for all those who care about the NHS and its future to make clear, at every opportunity, that they are opposed in principle to the development of ACOs, for the following reasons:

  • No case has been made for the use of the ACO model. There is no research to support taking a model developed in the worst-performing country for health care in the developed world (the USA) and using it to replace the system used in the best health care system in the developed world (the NHS).
  • In fact these changes are just a smoke-screen for cuts. The Government should be pressed to properly fund the NHS and social care, not to make radical organisational changes that will waste more money on new salaries, redundancies and consultancy fees. We should not be wasting our time on planning organisational change but overturning austerity.
  • There is no democratic mandate for the reforms. There is no legislation to support them and there has been no Parliamentary scrutiny of them.
  • ACOs are not statutory bodies and so, as the functions of local statutory bodies are moved into new regional entities, that work can be bundled together and privatised.
  • ACOs themselves are not democratic. They are not accountable to local people, neither directly by election, nor indirectly by the involvement of elected local councillors on their board.
  • ACOs do not respect local democracy and are disconnected from local identities. Their boundaries frequently make no sense to citizens nor to existing institutions. For example, the proposed South Yorkshire & Bassetlaw ACO effectively annexes part of Nottinghamshire into Yorkshire.

In particular, it is surely the duty of local government to reject this shift in policy and to refuse to cooperate with plans to establish ACOs (or similar non-statutory regional bodies).

Principles for change

Most of us who want to defend the NHS are united in wanting to see an end to the era of internal markets, privatisation and commissioning. However this does not answer the question of how we would like the NHS to be organised instead.

Even prior to 1992, when the era of commissioning began, the NHS has had a history of being constantly and pointlessly reorganised by Whitehall and London-based politicians. We all want a National Health Service – but not every decision can or should be made in London by a bureaucrat or politician. The NHS is one of the largest and most complex organisations in the world. Decisions need to be made at many different levels and in many different contexts, by citizens, professionals and democratic bodies.

To begin with we need to reflect more deeply on the principles that should underpin the long-term organisation of the NHS, and so I am going to propose 5 broad principles:

  1. Justice – The organisation of the NHS must be designed to promote social justice, not just by providing free high quality healthcare to everyone, but also by promoting income equality within its own salary structures and social justice in wider social structures (e.g. housing, social care, social security and education).
  2. Democracy – The NHS belongs to the people and it must be accountable to the people through established democratic structures and appropriate statutory bodies.
  3. Subsidiarity – The NHS is a large and complex system and decisions need to be made by the right people, at the right point. Some decisions should be left to citizens or to professionals; others must be made at the level of the local community or at appropriate regional levels. Only those decisions which really must be made nationally should be made in Whitehall (or Edinburgh, Cardiff or Belfast).
  4. Citizenship – The NHS must encourage a culture of trust, openness and citizen responsibility at every level of society. It is a public good, part of our common and shared inheritance and we all have a shared responsibility to develop and improve it for future generations.
  5. Stability – Constantly changing managerial structures undermines effectiveness, innovation and trust. The NHS needs to work within a framework which is much more stable over time. The costs of constant reorganisation far outweigh the putative and contradictory benefits of any proposed reform.

Democracy and the NHS

If these are the right principles then our goal over the long-run must be to push for significant positive reforms to apply these principles and to protect the NHS and strengthen its status as part of our common inheritance.

In outline the following steps for positive reform can be envisioned:

1. Constitutional reform – The right to free healthcare for all should be a constitutional right, protected not just by law but by further constitutional measures that would limit the ability of politicians to interfere unduly in the principles of the NHS or in the structures of local government. Such rights could be established alongside other economic and social rights – rights which the UK has signed up to internationally – but which it currently does not respect at home. Under the current administration the prospects of fundamental and positive change may well be very poor, but looking to the future it is quite possible to imagine changes in the constitution of the UK that would better safeguard the NHS and our social and economic rights more generally for the future.

2. Democratic control – Central government must guide overall policy and help define the general rules within which local people work. However there is no reason why people in different areas cannot make their own decisions about how they want to organise health care in their own communities. Developing a strong and sustainable welfare state means working through and with citizens and ensuring democratic accountability.

3. No ACOs – The idea of Accountable Care Organisation must be abandoned. It refers to US system which we do not want and which offers no value. It suggests additional accountability, but it in fact it is about reducing accountability. The idea is worse than useless and must be abandoned.

4. Stable local structures – Ideally the NHS would be organised around a stable configuration of local government boundaries and one that allowed for regional, local and neighbourhood levels of discretion, with suitable democratic structures at every level. However, currently local democracy in the UK is very weak and needs to be improved. Until better systems are developed the NHS must be organised around existing local authority boundaries. Any plan to make decisions at a level larger than the local authority – let’s call this an Area level – should only be possible with the explicit agreement of all local authorities within that area. It is totally unacceptable that NHS structures can be gerrymandered by Whitehall. Local authorities must agree to the creation of any area or regional structures that includes them.

5. Governance – If we accept the need for a larger decision making body beyond the boundaries of the local authority then let us call these Area Health Authorities. If there are no direct democratic elections to such Area Health Authorities then only existing local councillors from local authorities within that area have the necessary mandate to speak up for local people. Hence the board of the Area Health Authority must, as a minimum, be made up by a majority of locally elected councillors.

6. Management – Taking on the role of overseeing local health services is complex work and so a proportion of the significant existing resources currently spent on management within the NHS should be shifted into the direct control of local authorities.

7. Legality – Until any new statutory body, like an Area Health Authority, is created then the primary responsibility for delivering NHS responsibilities must lie with either an existing statutory NHS body or a local government body. There should be no risk that the management and over-sight functions are delegated to some non-statutory body which can be privatised or can avoid direct democratic scrutiny.

Although many of these potential reforms would certainly not be supported by the current Conservative Government it is not clear that other political parties would not support these principles. In fact several Conservative MPs are showing signs that the creation of ACOs is one crazy reform too far.

Nor is there any reason why local councils could not adopt some of these ideas a goals as part of their negotiations with the NHS, whatever the pressures from Whitehall. Currently Health & Wellbeing Boards are supposed to act as the guarantors of locally defined plans and appropriate shared accountability between the NHS and local government. In the short-run it should be these bodies who decide how local services are organised.

Shifting power away from local authorities and towards bureaucratically defined and unaccountable areas will do nothing to improve the NHS or to resolve its funding problems.

A short note on social care

There is a tendency to run together health and social care as if they are, or should be, one service. In fact the idea that health and social care can or should be integrated is a very dubious nostrum. There are good reasons why social care has remained stubbornly distinct from health care, not just in the UK, but around the world:

  1. Social care is predominantly focused on helping people live their lives as citizens, by respecting and supporting person autonomy – it is not a form of health care where the professional is largely the expert.
  2. Social care, because it is about the whole of life, must also be sensitive to issues of housing and education – not just health care – in fact for children education is a much more significant partner than the NHS.
  3. Social care is best organised in partnership with citizens, families and local communities, with support by systems of funding controlled by individuals.
  4. In practice social care can be organised by people and families, with support from national or local funding, and underpinned by local services. There are good reasons why local government will continue to play an important role in shaping social care and other local community services.

Clearly the current crisis in funding, which particularly targets social care and local government, is caused by the ideological commitment of the Government to drive down the level of public spending. This is putting the current system under tremendous strain. However this is not a reason to shift adult social care into the hands of the NHS. Instead local government must insist on their right to play its part in ensuring that local healthcare systems are designed to respect the rights and needs of local people.

Local government must not become a bystander, watching on as the NHS is pushed through another wave of chaotic organisational changes, instead it should be the champion of the interests of local people.

Conclusion

The idea that the NHS should be democratic and more accountable at a local level has been around along time. In fact it is, as I understand it, the policy position of the Socialist Health Association. However the debate about a more local NHS was derailed by the 1992 market reforms and since then the drift of policy has been to increased bureaucratisation and to central control.

Personally I think the Labour Party’s new stance, committing itself to the full renationalisation of the NHS, is entirely correct. I am hopeful that the era of mindless neoliberalism and meritocratic top-down management is finally tottering (if far too slowly) to a close.

So now is an excellent time to start thinking about the kind of NHS we really want.

We certainly want end to the crazy market systems; but surely we do not want to go back to an era of centralisation and to constant reorganisation. Perhaps it is time to consider entrusting the NHS to us – the people.

Further reading

These ideas reflect a long tradition of human rights developments around the world. These publications may be of interest:

Duffy S (2017) Heading Upstream: Barnsley’s Innovations for Social Justice. Sheffield: Centre for Welfare Reform.

Hunt P (2017) Social Rights Are Human Rights: but the UK system is rigged. Sheffield: Centre for Welfare Reform.

Potts H (2008) Participation and the Right to the Highest Attainable Standard of Health. Colchester: Human Rights Centre, University of Essex.

Potts H (2008) Accountability and the Right to the Highest Attainable Standard of Health. Colchester: Human Rights Centre, University of Essex.

First published by the Centre for Welfare Reform.

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We hear that NHS England faces a tough dialogue with the Treasury post-Budget and will, most likely get the go-ahead for its latest plan – to set up Accountable Care Organisations (ACOs). For some, it is a rational response to the failure of the Lansley structural reorganisation – a logical extension to the 44 STPs created in 2016. For others, it is the clearest yet pointer to a privatised NHS, USA-style.

We need not enter the controversy. Ours is a simple question. Where does this leave the statutory obligations to engage, involve and consult patients and public?

The term ‘accountable’ should be a promising sign. But accountable to whom? And for what?

Early signs are that these new bodies will be consortia of providers cutting across traditional NHS and social care services, so the primary route of accountability is clearly contractual. Until primary legislation is changed, that means that CCGs remain responsible for commissioning services and as part of that, have an extensive requirement to involve and consult, covering their plans, service performance and proposals for change. Few Parliamentarians would support the removal of these rights. The prospects of key decisions being taken by obscure arms-length bodies beyond the reach of public accountability would be anathema to MPs whose constituents fully expect to have their voices heard.

We hear that ACOs will face a barrage of legal challenges across a wide range of disputed issues. But as far as public and patient involvement is concerned, this is unnecessary. All that is needed is for Ministers to clarify that ACOs will be bound by the well-established requirements to engage and consult that apply to single providers. We already have the confusing position that major service changes see CCGs bound by the statutory provisions in the 2012 Act, NHS Hospital Trusts still operating under the 2006 Act and local authorities wrestling with the 2014 Care Act and the ‘legitimate expectations’ of consultation on social care and other services.

In practice, common sense applies. Our experience as an Institute is that Managers are, in general, eager to consult local people as effectively as possible. Legal and political challenges only delay and frustrate their plans to implement change – many of which are needed to improve patient care.

The danger is that a BREXIT-battered Treasury may seize upon the ACOs as a means to accelerate its cost-reduction agenda by sidestepping the expensive and time-consuming processes of dialogue with local communities. Such an approach is a recipe for political turmoil, and the Parliamentary arithmetic suggests they would be foolish to try. All one needs is a handful of Conservative MPs in marginal seats with threatened hospital services to mount a rebellion.

On the subject of which, watch for the coming judicial review about Horton Hospital (re Oxfordshire CCG) in the coming days. For local people, their elected representatives, the media and for the staff who work in the NHS and at Councils, having such recourse to the Courts matters. For it is their ultimate assurance that Managers cannot by-pass the duty to involve and consult that Parliament has decreed. If the Government confirms that all these rights will apply fully to ACOs, it will do much to retain public confidence, avoid uncertainty and dodge the bullet of political turbulence.

This was first published by the Consultation Institute

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A new, independent and broad-based citizens’ initiative – the People’s Plan – was launched in Greater Manchester last October and has now published its findings.  This extract covers health and care  – but other parts of the plan would also impact on health. 

People's plan

Since 2016 Greater Manchester has responsibilities for managing and integrating hitherto separate, centrally funded NHS services and local authority adult care services. Both services are in crisis: in adult care, austerity budget cuts have reduced numbers receiving home care by some 20% nationally; and in health services, the halving of the number of hospital beds over the past thirty years has created a fragile system that suffers with demand peaks or delayed discharges. The National Audit Office has questioned whether integration of health and care will save money or reduce hospital admissions; and this finding is ominous when Greater Manchester has a predicted £2 billion shortfall in health and care expenditure within five years. Against this background, it is unclear how Greater Manchester will find the policy levers, financial resources and political will to tackle prevention of ill health and low life expectancy in deprived localities.

Challenge 1:How to lever in more financial resources for health and care services, where social ownership and operation of free services should be defended

Event participants recognised that “services cannot be run without proper funding” and the first priority of survey respondents is levering in more public funding. In health, as in housing, what citizens want is public provision that depends on reversing austerity cuts. By implication, the Greater Manchester mayor and other Greater Manchester politicians need to change central priorities as much as manage local services; as a Bury event participant put it: “make it the Mayor’s job to fight for more money for local services”.

The other clear theme is that public funding should support socially owned and operated services. While voluntary and other third-sector providers are often complimented, references to private providers in health and care are mostly negative: “Resist the influence of the private sector, because it takes money out of the system”; other respondents had concerns for poor pay and conditions in outsourced adult care.

Pointers on what to do:

  • Lever in more public funding.

83% of all survey respondents agreed that ‘Greater Manchester should urgently seek a better funded deal for health and social care’ – with just 2% opposed. Here again, as in other policy areas, like housing, what respondents want the Greater Manchester mayor and other Greater Manchester politicians to do is not just manage the system within existing funding limits but claim more resources. For example, investment in training for ongoing supply of nurses in Greater Manchester services is an area where consequences of cuts to bursaries are a serious concern.

  • Use public funds to support not-for-profit and publicly owned and operated services.

Survey respondents and event participants were against further outsourcing or privatisation. Health and care services need new ‘step down’ facilities for discharged hospital patients who cannot go back to their own homes and do not have a care home bed; but 67% of all survey respondents believed such facilities should be built and operated by NHS providers and 74% also supported provision by other not-for-profit providers, with only 10% supporting private for-profit providers.

People's Plan

Challenge 2: Build a new kind of NHS as a civic institution which offers a wide range of stakeholders more participation in decision-making as well as providing more user-friendly services

Citizen attachment to the NHS is not all sentimental and uncritical. Ministers and managers have sought to restructure health and care services so that they meet user demands more effectively, but citizen critics go further and ask for a redefinition of the NHS as a new kind of civic institution where a wide range of local stakeholders would have a major influence over decision-making.

At a café-style event conversation about ‘Devo Manc’, participants posed a challenge to “find ways to put health and social care close to communities”. There is widespread dissatisfaction with current forms of consultation that are too often about changes already decided by service managers.

Pointers on what to do:

  • Experiment with direct public participation in decision-making.

65% of all survey respondents wanted direct participation by the public for proposed changes, through means such as online polling, for example, whose results could not be easily ignored.

  • Create an advisory board representing wider interests.

More traditional forms of representative democracy have even wider support. 77% of all survey respondents wanted a wider advisory board representing different stakeholders including voluntary and community organisations as well as provider groups. For example, representation for those with learning disabilities and their many challenges was strongly featured in the Health and Care themed event.

  • Provide more user-friendly services on a local community basis.

This is the point where citizen priorities align with those of politicians and service managers. At a Greater Manchester Older People’s Network event and in surveys, the GP and hospital appointments systems were described as “barriers” to access, with specific criticism about the availability of “on the day” appointments; and at a Wythenshawe event the complaint was that “public transport never lines up properly with health services”

Challenge 3: How to put more resources into prevention and into the inadequately funded ‘Cinderella’ services of mental health and adult care, which have now been damaged by austerity cuts

Many of the open survey responses and comments of event participants highlighted the problem of ‘Cinderella’ services. Some event participants thought hospitals were claiming resources that should have gone to prevention, primary and community provision; all agreed with the survey respondent who wanted “greater emphasis on prevention not cure” and worried about how austerity cuts in mental health and adult care had aggravated long standing problems about service provision. The result is pervasive insecurity about service availability, crystallised by the question at one Tameside event: ”will it be there when you or your family members need it?”.

Pointers on what to do

  • Stop cuts to mental health services and increase funding.

This connects with prevention because, as one survey respondent argued, with more funding for primary care, GPs should be able to prescribe more one-on-one counselling and for more than six weeks.

  • Revalue the workforce in adult care.

Some open responses registered the point that care workers are paid and trained worse than health service workers, although they had an increasingly important role in an ageing society. As one respondent argued: ”properly trained care assistants would help people to stay at home”.

David was  one of the people involved in contributing/drafting/editing/finalising the plan, but he is not the sole author

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The transformative effects of the world-wide-web and the digital revolution are everywhere. Lives of citizens have been revolutionised as access to the web has completely altered how people connect and communicate with each other. The information technology revolution continues to challenge traditional ways in which human beings trade, communicate, organise, investigate, learn, and how they project themselves. The current political landscape is characterized by at least two interesting developments: political problems such as those surrounding the economy and environment are becoming more transnational, and citizens now have a capability to operate on their own terms rather than as members of traditional hierarchical interest and advocacy organizations.

digital revolution

Against this fast-moving and ever-changing background, in February 2016, the House of Lords agreed to continue the ancient practice of storing all British laws on vellum. Politics and politicians deserve what the digital revolution is doing to them: Western political systems have hardly changed in generations and are ripe for disruption. Cash for questions, expenses scandals, endemic corruption are all expected consequences of power: but enforced austerity by unelected technocrats, international migration crises, and lost opportunities for generations of young people demonstrate that political systems’ behaviours whose roots are nineteenth-century are incapable of identifying, let alone implementing solutions for our age. Narrow self-serving and self perpetuating elites who, in partnership with conventional media, have been peddling their self-interested version of reality now rage against the digital machine.

Some of this is easily explained. Whilst the pace of government is cumbersome and slow, technology is fast-moving and dynamic, making politics seem tired and dull. Political thinking is lame by comparison with the big ideas coming out of the information technology industry. Advances in software have thrown up fresh ways to think about what it means to own something, to share something, to be a citizen, to have a private life, and how to self-identify. These are among the most important questions of modern politics. However, they rarely get expressed by politicians or conventional political parties.

Whilst politicians wrestle with how to “manage” digitization, it continues to produce huge benefits in many parts of the world. In Nigeria phone-based banking for the first time permits money transfers without the physical exchange of cash, massively enhancing wealth-generating possibilities. In China, a billion phone users now pose an existential treat to the monolithic communist power structure. The Arab Spring, Tahir Square, and the Occupy movement: all were driven forward by a new generation of activists exploiting social media. Watch migrants unload in Lampedusa: a few possessions and a phone. Less propitiously, emergent terrorist organisations such as ISIS have understood from their outset that the power and influence of the web – the development of a digital caliphate – is key to dissemination of their violent message and the recruitment of adherents. In some cases, these changes are occurring either despite government opposition or because of bad government; more generally though governments seem not even relevant or incidental to these changes. They are simply encircled by them.

Governments have not though ignored the digital revolution. They have utilised the techniques of e-commerce and big business for their own narrow purposes, spending heavily on algorithm-based data mining to target election campaigning and political advertising with the aim of securing and retaining power. Ironically, of course, as the focus of politicians becomes ever more targeted on the key swing voters, districts, and constituencies, then the greater the distance between politicians and the people becomes, and the more people turn on to digital. Politicians have also been busy, as Snowden revealed, regularizing the mass surveillance of its citizens: listening-in but not listening to. And they have, thirdly, simply blamed and ridiculed digital communities, caricaturing them as short attention span clickbait zealots; populists who don’t understand the complexity of achieving change in a pluralistic system.

Conversely, the digital revolution in politics is another healthy sign that ordinary citizens haven’t given up on politics. In some respects, digital activity has been translated into a proliferation of political activity both within and beyond the traditional outlets. Particularly in countries with more plural systems, the internet has been influential in promoting emergent parties. The German Pirate party and Italy’s Five Star Party make good use of digital technology to manage their message (as ever, the medium is the message).

Nevertheless, it is certainly true that as the membership of mainstream political parties has fallen away and voter turnout has declined across the western world, irregular political campaigning has expanded. Concerned individuals often coalesce around issues that reflect their own interests. The new information technology has been an enormous help in this regard, enabling ad hoc pressure groups to form and allowing like-minded individuals to find each other and share their concerns. But this too creates an imbalance between the political class and the rest. Professional politics is becoming more concentrated – witness the emergence of the modern political dynasties – at the same time citizen politics is becoming more fragmented.

But it needn’t be like this. Democracy functions best when citizens get good information about what their government is doing. Widespread transparency makes citizens better and more active participants and makes politicians more accountable. Democracy, at least in its ideal form, promotes equality of power. Democracy promotes debate. Democracy can bring together individuals with high diverse viewpoints. Debate and deliberation forces people to improve and strengthen their arguments. It is axiomatic to me that many of the major problems facing governments today are complex and multi-faceted, requiring negotiation, compromise, but also clarity about goals. Bringing people together is what the internet does: democracy is the function of harmonising discrepancy, of managing disagreement, and of legitimising leadership and authorising progress. Here are four proposals to unlock the full potential of democracy as a collective decision-making institution in the age of the Internet.

Firstly, the role of technology companies can and should change, but this requires leadership from within. Facebook’s community is larger than many countries, and the magnates running such companies have the power to change them for the better. Do they have the will though? Mark Zuckerberg’s new year message hinted at insight into his personal disconnect from reality. He should take responsibility for the content of what Facebook circulates, and see himself as a leader not a tech geek. Most important, Facebook should not allow such stories to be presented as news, much less spread. If they take advertising revenue for promoting political misinformation, they should face the same regulatory punishments that a broadcaster would face for doing such a public disservice.

Secondly, there is a role every user of digital technology can play. The internet has made us less trusting of our own judgements (and those of experts) and more deferential to the wisdom of crowds. A rebalancing is needed in the way we calibrate our understanding: sure experts get it wrong; but so do mass hysteria crowds. The solipsistic echo chamber that is Twitter and Facebook thrives on selective affinity: “I like you because you agree with me”. Perhaps an individual, helpful response is to be more Socratean, welcoming what we do not know or understand, happy to acknowledge our limitations, but eager to learn.

Thirdly, collectively, we need to recognise that social media is here to stay but that it can also be a huge positive. Social media can shine the light of transparency on the workings of a Trump. Was Hillary Clinton really replaced by an alien in the final weeks of the 2016 campaign? We all need to be able to see who wrote this story, whether it is true, and how it was spread. Rather than seeing social media solely as the means by which Trump ensnared his presidential goal, we should appreciate how they can provide a wealth of valuable data to understand the anger and despair that the polls missed, and to analyse political behaviour in the times ahead. Valuable democratic opportunities are created on social media when people use them to talk to politicians and civil servants, and to each other. Social media radically reduce the cost and difficulty of people organising themselves, forming ‘communities of interest’ united by a shared concern, whether a common complaint about a local NHS service, opposition to a local planning application, or a suggestion for a traffic calming measure.

Finally, and lastly, there is the issue of what government can do. There are emerging expectations for MPs to listen to and engage with people on these channels. Politicians need to use social media to learn more about the needs and views of their constituents, and as a gateway to more sustained contact with their constituents.

Like all successful politics it starts at the local level: social media users are more likely to contact their local politicians – a local councillor or constituency MP – than national politicians. The public debate is on social media and Parliament should catch up. Listening to these gives an opportunity to bridge national institutions with street-level social reality, fashioning new instruments in gathering and understanding social attitudes on politics and policy. Therefore, every parliamentary debate should have a social media element to allow the public to offer their views and opinions for the benefit of the participants. Numerous social media platforms support the streaming of live video, allowing viewers to tune in and comment on debates in real time.

Government can also help prepare the digital users of tomorrow for a world in which facts are contested more than ever. As Peter Hyman wrote recently: “In a world of “alternative facts”, how can we give young people the skills to shine a spotlight on the truth?” We need education to promote questioning, critical thinking and critical analysis of evidence and the news as a defence against the worst excesses of the internet.

In conclusion, a health warning about our fascination with digital: we’ve been here before. The death of democracy was widely predicted with the advent of mass-circulation newspapers and then again with the broadcasting of Parliament. And, of course, not everyone shares that fascination with digital. The explosion of new digital practices has occurred within a social context where many are excluded or unwilling to participate in such practices. Not everyone uses social media – including some of the poorest and most vulnerable in society. Political change is a hard grind, requiring face-to-face contact, and development of political and community relationships over years, not seconds. Technology is not a panacea for the problems democracy faces.

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Please note that the following is just rough notes, and should be supplemented by viewing the video of the event;

26/9/2016 Democratic Accountability in the NHS
Chair Chris Bain

Speakers:
Dr Brian Fisher: Vice President of the Socialist Health Association: Brian firmly believes that patients should have full access to data about them and that this will enhance safety and care.

Andrew Gwynn MP: was appointed to the Shadow Health team by Ed Miliband, and was reappointed in September 2015.

Dr Ivan Bennett: sits on the GM Clinical Senate and is a Non-Executive Director at the Central Manchester University NHS Foundation Trust with an interest in Patient Experience and is ‘Freedom to speak out” guardian

Estephanie Dunn: regional director for the Royal College of Nursing’s North West region.

Chris Hopson: Chief Executive NHS Providers

Brian Fisher: ACCOUNTABILITY IN THE NHS – THE LEFT’S BLIND SPOT

The streetfighting in the LP about democracy has no echoes on the left in the NHS. The left appears to have almost no interest in enabling patients and communities to shape their care and their NHS.
Communities have huge commitment and love for the NHS. In Lewisham we had 25000 people on the streets to save our A+E. And the same is happening up and down the country in face of the govt’s austerity and dismantling of the NHS.
But policy discussions on the left rarely consider how that energy and intelligence can be hard-wired into our plans for the NHS. We talk endlessly about privatisation and restructuring and the powers of the SoS. If we want a thoughtful, responsive and personal health and care service, we need to pay as much attention to how individual patients and communities can become part of the decision-making in the heart of the NHS.
I am shocked and angry that the debate remains at the level of “Let’s bring back CHCs”. Yes, we need such formal structures, but this remains a totally inadequate policy programme for accountability and transparency.
We need to offer a vision of health and involvement that enhances care, improves health and makes sure that NHS and LA organisations are responsive to the communities they serve.

We now have good evidence that health improves when people can:

  • CONNECT with others
  • CONTROL more of their lives
  • Gain CONFIDENCE

So, to integrate accountability and transparency throughout the NHS we need to ensure that these relationships and support for them are built and sustained by every NHS worker and every NHS structure. Here are 2 ways that illustrate what I mean and about which I have personal experience.

E-HEALTH AND RECORD ACCESS

IT offers huge scope for improving the responsiveness of the NHS to individuals and communities. I am co-director of a company that makes all this possible, as part of the NHS now.

  • Feedback
  • Links with community groups through social prescribing
  • Record access +
    • All integrated
    • PHR
    • Understanding and control

COMMUNITY DEVELOPMENT

Experience from across the world, backed by good evidence, shows that by building face to face social networks between people through processes such as community development, huge changes can happen – to people’s lives, to professionals’ lives and to the lives of communities. By supporting communities and their own assets to develop their own agenda for change and then working with statutory agencies to meet the issues that matter to them, we can:

  • Improve health
  • Improve the responsiveness of the statutory sector
  • Help tackle Health Inequalities
  • Improve individual health behaviours

AND it appears to be a good investment. 1:4

We need Community Development Workerss throughout communities linked to the NHS and Local Authorities, and probably housing as well.

WHY ARE THESE ISSUES NOT ROUTINE ON THE LEFT?

They are being implemented now. The LP and the left has a huge legacy of community action and social movements. The right wing is hijacking these right now. This should be our agenda. We can offer real and powerful ways that push the boundaries of accountability and transparency – let’s do that together.

Andrew Gwynn MP:

Parliamentary accountability for healthcare was though the Secretary of State for Health, and it is a disaster this link has been broken. Jeremy Hunt can now say it has nothing to do with him as its NHS business, but by the same token he can’t claim at the same time to be the voice for patients. When patients want to complain they should be able to take it up with the Secretary of State for Health.

The agenda for the devolution of health in Manchester was developed from spring 2016. We must be careful. there may be some positives, but there are also some risks. Manchester’s’ 6-billion-pound health budget can help forge new relationships and plan better, more patient centred services, but there is still a funding gap. By 2021 that gap is projected to be £1.7 billion, and there are endemic health inequalities in the region. Is devo being set up to fail? Manchester is one of the first care and health integrated regions. Thameside local hospital and clinical Commissioning group work with a single aim and budget. So is national accountability reclaimed at a local level? We need more MPs aware of what is going on and Local authorities to hold the integrated care organisations to account. Too many councillors just nod through decisions therefore we must upscale the capabilities of councillors and hold them to account. Local Authorities are well placed to meet the challenge, but they must invest in training and their capabilities to hold the NHS bodies to account.

Empowering the patient: The NHS does things to you. With new technology we can genuinely empower patients to be far more involved locally. STPs have planned health and care to meet budgetary needs, but now there is an opportunity to meet health and care needs. Health cuts backs have been to the detriment of tackling health inequalities, Life expectancy in Denton South is 10 years less than Denton North, therefore we need to empower patients to ensure we determine the social needs of an individual – inoculations, housing, environment and wellbeing. We need to develop a wellbeing strategy to narrow inequalities. However we devise accountability we must retain the N in NHS. We can deliver locally, for local needs but the N is crucial. There must be no postcode lotteries. Best practice should be picked on and developed nationally. Accountability must be strengthened to restore the powers of the Secretary of State for Health. We need accountability in Parliament, Councillors, neighbourhoods and local communities.

Chris Bain: We should also emphasise the S for Service in the NHS – not a privatised S for system.

Estephanie Dunn:

I put patients at the heart of whatever I do. We came early to the idea of devolution, but there was no conversation with nurses around concerns with service quality and sustainability. Details about how funding will work were not laid down. We now have the added challenge of economic uncertainty. A lot of the investment was going to come from the EU. It is crucial that the people on the ground change their behaviours, but the numbers of nurses, doctors and other health professionals is reduced, the numbers and role of school nurses is reduced at a time when safeguarding is needed more than ever, due to bullying, suicide, deprivation and people are disengaging. There is an increasing number of women in single parent households who are disadvantaged. Activated patients take more responsibility for their health and we need to re-educate society how this will work. People need to take more control, but there must be a safety net. When people feel disadvantaged and dis-empowered they don’t take care of themselves. They use social tranquillisers like drink, smoking illegal drugs, overeating and poor diets. The change will not happen overnight after generations of disadvantage. There is a lack of awareness as to how the body works. A massive education programme is needed. 80% of the local population in Manchester didn’t understand how devolution works. There should be “nothing about us without us”. We need to be held to account not by the Local authority, but by the people. They should know we now have a system with insufficient resources – we lack the numbers needed of doctors, nurses, and other healthcare staff.

Ivan Benett:

I have an interest in the patient experience. What say do patients have in the service they receive? There is some demonstration of accountability in the NHS, but not a lot. The Health and Wellbeing Board in Manchester works well, and is a positive force for change. The Health and Wellbeing Board has a say in strategy for the city. The Health Scrutiny Committee reviews and scrutinises health services and acts as a consultative body to local health providers when they have a duty to consult. It is not responsive to patient’s needs.

The Clinical Commissioning Group is thought to have more power than it does. It is made up of GPs, and is accountable to group practices. If they don’t want to do something, then they don’t. Patient Participation Groups. PPGs can speak, but they are not really listened to – they are a kind of add on. CCGs hold the secondary care budget as well as the prescribing budget.

We need better input from people. Group practices are not a part of the health service and have no more accountability than a greengrocer. Most just pay lip service and they should be doing much more. Acute Trusts are more reasonable. The public can have a role and can influence. By becoming a Governor, you can hold the board to account. Governors can appoint and dismiss the chair and non-executive directors. To sum up there are a number of gaps in accountability.

Chris Hopson:

The NHS budget is £120 Billion, around 1/6th or 1/7th of GDP. It provides a vital national service. The NHS is the one thing that stands out making us proud to be British. Since the NHS has so much of public funding then the Secretary of State for Health should be capable of scrutiny by Parliament. The NHS has 1.3 million staff, so we are dealing with a complex structure. However there is the implication that the Secretary of State should make all the decisions. Too many roads lead to the Secretary of State’s office, and he has been meddling. Initially Alan Milburn thought he should be solely accountable but later he felt it was too complex and there should be local accountability. A key role of local government is as commissioners of care. There is a need to support local people better. Clinical Commissioning Groups have an important role to play, along with Foundation Trusts.

It is an important model. The system is under huge amounts of pressure and clear governance is needed. Who do we hold to account if things go wrong? A single unitary board, acting as a whole seems the most practical model.

Questions:

Corrie Lowrie: I felt that as a governor I was just there for window dressing. Too much money was wasted on booklets to tell people “how good they were”. Nobody has mentioned the elephant in the room – privatisation, or the people who don’t want to share their medical notes. Nobody asked me if I wanted to be devolved. The amount of money going into private companies is not mentioned at all in the Socialist Health Association, nor are the numbers of private health organisations hiding behind the NHS banner. A sugar tax would be more effective in supporting people to live healthy lives than these private companies with their interest in profit, and Milburn owns a private health company. If we had true democracy then we should let the public know how the NHS is being sold off, and the government is Americanising it. I hate to see all this “manage your own health” rhetoric. It is an empty slogan.

Mike Hobbs: consultant psychiatrist; Public and patient engagement forums are not engaging and are not well heard. How do we engage with the community and at the level of the people who use the services? Healthwatch is still very patchy and the budget is stripped out. Local authorities are increasingly taking on the role of commissioning in health and social care, but they are not very accountable.

Responses:

The NHS needs to go back to basic principles. An integrated health and care system would strip out the waste of tendering and break down the commissioning split. I don’t agree with the free market approach, it is inadequately challenged through democracy. Andy Burnham has been looking at how to bring the care system back into the public sector. Local authorities cannot put sufficient packages into place as numbers and quality are not adequate. The NHS is looking at how to bring care provision in house. Care is integral to the NHS. Some decisions Parliament has made are detrimental to the public NHS, and the Shadow Health team are working on how to put “Public” back in the NHS. But it is not just the public who are in the dark. I sometimes only get to hear things via my opposite numbers. Shadow Health Ministers are cut out of any discussions. Devo is an opportunity, but also a risk. Not only does the government cut our grant, but then Hunt ignores the good stuff and concentrates on the bad bits cause by his governments funding gap…he puts the blame on Labour, Manchester.

There is a difference between organisations which must put profits and shareholders first and for example, hospices. The hospice movement has made a fundamental contribution. It is not profit making, and there is an appropriate role for non-profit making organisations.

Taking responsibility and looking after yourself; People should get support to do that, but they must also get the support they need if more specialist healthcare is needed.

There is an opportunity to make it better with formal democratic involvement. The NHS is undemocratic. Parliament under the Health and Social Care Act is becoming less and less accountable, due to among other things the STPs. There are informal ways in which communities can make a difference in shaping care locally. Become a member of a Trust, and PPGs can be really active.

Katy Gardner: Already councillors are too overworked and underfunded. They must be really on the ball or they will be run by council officials. The SHA has a role to play in upskilling councillors – you don’t know what you don’t know.

Derek Timmins: Talking about elephants in the room, think of Kaiser Permanente. It is a nightmare. We are five minutes to midnight to the breakup of the NHS. It has the second lowest funding in Europe. This is a political choice and political ideology. As for public accountability. Look at the case of Cheshire sexual health. The contract was awarded to Crewe. The councillors raised objections, the chair of the clinical commissioning groups raised objections. Everyone thought the weight of opposition was such that the day had been won, but the chairman pushed it through on a nod (his nod). To fight such huge injustices is beyond most peoples’ capabilities.

Patient Participation groups. The patient voice has been disenfranchised to be replaced with that of transactional costs, lawyers, management consultants and accountants. Locally we see increasingly the phenomenon of revolving doors, for which I blame the influence of MPs. There is a huge democratic deficit. One last point on conflicts of interest. Conflicts of interest are all too often simply not declared. MPs are supposed to represent us. They need to get their act together, and we need to get ours together and make sure they do. It’s down to our representatives doing their job better.

Jos Bell: There is a lot of consultation work around child and family services, but evaluating projects is now a token gesture. Shaping a Healthier Future;  Imperial College Healthcare NHS Trust closed two A&Es and there was a massive spike in the demand on A&E services in the one A&E department left. It became the worst in the country. They want to demolish Charing Cross hospital. Meetings are held in secret and doors guarded by security staff. They wouldn’t even let the MP in. There is a massive funding deficit. STP plans are barely known. We could swing a Tory majority to a Labour one by making these issues known about the NHS. Councils could start by refusing to sign off STPs or Shaping a Healthier Future. Councillors are told they won’t get public funding if they don’t sign up, but STPs are not a good thing. They might have potential, but not given the lack of funding and lack of staff. 90 minutes is the average length of time for a serious ambulance call out.

Brian Fisher:
STPs are another example of magical thinking. There are heroic assumptions but in practice the NHS will just experience cuts and privatisation as a result. The laws for tendering are still in place. Hunt is still in place as nobody else wanted to do it, and the press liked the Milburn version not the Burnham version. We are up against it. We have some fantastic MPs but there is a Tory majority. See ministerial appointments e.g. Phillip Dunne

Chris Bain:
Thank you for a fantastic discussion. We must work on ideas on how to engage the wider community, and hold up a mirror to where things need to be done differently. There are huge challenges, especially around private sector involvement, a world where they would rather have an empty bed than be commissioned at a loss. We also need to deal with the poor quality of care and somehow make things work again. I had hoped there would be more positivity. We must find a simple and easy to operate system which does not come at the expense of the running of a complex system like the NHS.

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Videos of our meeting in Liverpool on 26th September

Dr Brian Fisher,

Andrew Gwynne MP

Dr Ivan Benett

Estephanie Dunn, Royal College of Nursing

Chris Hopson, Chief Executive NHS Providers

 

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With Sustainability and Transformation Plans (STPs) aimed at delivering multi-billion savings, being carried out secretly in 44 areas nationwide, this is a seminal moment for the NHS. Leaders need to engage the public in addressing the country’s health and social care crisis; come clean about what STPs can realistically deliver; and acknowledge that in some areas STPs could actually be asking the wrong questions.

Nine months ago NHS England announced that every health and social care system would produce a STP, the first drafts of which have now been submitted to NHS England. On one of August’s quieter news days they made major news, with STPs flagged as the means health bosses would save billions by closing hospitals and other services.

Let’s be clear. The principle of the STP is sound. After the disastrous destruction of planning arising from the Coalition’s 2012 Health and Social Care Act, the notion of bringing together providers and commissioners within a recognisable geographical area is a good one. STPs offer opportunities to explore options and collectively find solutions to various health and social care challenges. They also give the chance to join up health and social care, and involve local authorities much more – potentially key in an era of wider devolution.

So what’s the drawback? More money will be needed and transparency is key. STPs are being undertaken in the context of the greatest financial squeeze ever experienced by the NHS, and between them they have to deliver at least £20bn of savings. It’s fanciful to think they can do this without hard choices being made by the government about what the NHS will now stop doing.

And the plans are being drafted in secret as the STP’s geographical footprints have no statutory basis, no clear governance or decision-making processes or obvious way for members of the public – or indeed their local Members of Parliament – to know what they contain.

Public engagement

Like other MPs my focus is on my own constituency. For Bristol South residents the STP is formed of Bristol, North Somerset and South Gloucestershire CCGs, a recognisable planning area (BNSSG) based on hospital catchments but covering three local authorities very different in their political and social demographic.

In 2004 the same geographical area joined together to produce the Bristol Health Services Plan. Then it comprised four Primary Care Trusts and the two acute Trusts. These six NHS bodies described the need for changes to ‘transform and modernise’ local health services largely by moving services closer to home, improving quality of care, bringing together specialist hospital services and improving the quality of old hospital buildings.

After scores of public meetings and a wide range of engagement with the public a plan was produced, agreed by all six Trusts and overseen by a joint scrutiny panel of the three local authorities. It resulted in the closure of one hospital, the building of a new large acute one, new community hospitals, GP surgeries and rationalising of other estate. Most of the promise was delivered.

What hasn’t been achieved since these agreements is the delivery of the assumptions that underpinned the plans in terms of how many beds would be needed, how long people would stay in hospital, and the substantial increase in community services including urgent care centres to reduce pressure on A & E. And that means that 12 years on largely the same population, in the same geography, with the same health and care needs, will now be getting a new Plan, its STP.

What will it reveal when we eventually see it? My own view locally is not very much. Old sites have been closed and old buildings replaced with newer more efficient ones. One hospital has a £50m annual deficit and there could be an additional £30 – 50m deficit in the wider BNSSG system.

Where can BNSSG find £80 – 100m worth of further savings? It doesn’t take an accounting genius to work out it can only be done by cutting staff, continuing the pay freeze, dissuading people from attending A&E, crude rationing of services to cut demand, reduction in attendances and admissions to hospital, and the recurring talk of prevention. None of these have worked before.

GP recruitment

It’s worth stating that in Bristol South the major NHS issue residents face is the sustainability of primary care – getting a GP appointment, for example. GP recruitment to south Bristol, with its high levels of health inequality, has long needed support, and sadly in the current world of NHS England organisation and GPs having the pick of more convenient or lucrative placements it is hard to see prospects of improvement. This problem cannot be solved by reducing hospital activity to save money. So from the perspective of my Bristol South residents, the STP is missing the point.

What will happen next? We can speculate but many who know the NHS predict:
• Government will finally bow to the inevitable and fund health systems that shout loudest or are in the most favoured locations.
• Staffing problems across all disciplines will continue to worsen with services gradually becoming unsustainable.
• Waiting times and lists will increase and targets will disappear.
• The NHS Constitution, which specifies our right to treatment within set times, will be watered down or voted away by the Tories’ huge English majority in Parliament.
• People who can afford it will choose private treatment so slowly a two tier system evolves.

Involving taxpayers in finding solutions

Make no mistake, in some areas major changes will be necessary. But the only chance NHS leaders have of securing public confidence going forward is involving taxpayers at the earliest possible stage, as we did in BNSSG 12 years ago, so they appreciate the challenge and help produce the solution.

In the absence of NHS leaders proactively involving the public, what can those who care about our NHS do to bring influence? Firstly, pressure must be applied to local leaders and NHS England to publish STPs, as I’m doing locally.

Other options, in the absence of a change of Government and or immediate Government policy, are:
• Lobbying local and national NHS bodies
• Attending Trust board and CCG governing body meetings
• Reading the public papers. Actually very little is secret – sometimes it is just hard to piece together.
• Demanding your £350m. Don’t let the Brexiters off the hook. In Bristol South 47% people voted out in the EU Referendum.
• Asserting your rights as laid out in the NHS Constitution and Handbook.

But it takes time, energy and capacity to take on large institutions. Busy people shouldn’t have to, especially when they are vulnerable as any patient is likely to be. Getting good quality healthcare, and the ticking timebomb of the scandal and silent misery of access to social care are prominent in the minds of the people we seek to represent.

So this is where the Labour Party should come in, speaking up on their behalf. Labour should be campaigning, ensuring people know their rights, enshrined in law by the last Labour Government under the NHS Constitution, and supporting the people who are being denied treatment.

Labour should welcome the way place-based planning can draw people together to find solutions, as a potential means to resolve some of problems caused by the Health and Social Care Act.

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