On the 24th of October 2017 I got the opportunity take my local campaigning for more openness and transparency in the NHS right to the top of the organisation.

Fellow Cambridge based activist Sam Smith had written to Matthew Swindells, one of NHS England’s directors, and effectively the organisation’s Chief Operating Officer, introducing him to what I have been doing; and to our surprise Matthew responded with an invitation to meet him in London to discus the challenges I’ve faced trying to observe, report on, and engage with our local NHS bodies.

I wasn’t going to let this potentially once in a life-time opportunity pass so I eagerly accepted.

There are a huge number of issues with the NHS including unfilled staff positions (a situation which might get worse depending on if and how the UK leaves the EU); slow ambulance response times; hospitals not having any spare capacity, preventing flow through the hospital; problems with the recognition of sepsis; variation in funding for treatments in different parts of the country; and the NHS, on occasion, not provide services people think it should.

Transparency though was the issue was invited to talk about, and it is one of the most important, because greater openness from our NHS bodies locally will enable problems to be tackled locally, and more transparency and openness will help inform our elected representatives, which will enable informed debate, locally and nationally.

Access to report on meetings using mobile phones, and other modern technology, is key for people to be able to find out what their local NHS bodies are doing, which is a necessary prerequisite to engaging from an informed point of view. Modern reporting enables people to back up their reports, and lobbying, with evidence of what was said, which means the established media, and elected reps, will give it greater weight and be better able to act on it. Being able to record meetings reduces the risks people have to take when sharing what has happened, as they have evidence to use to fend off libel challenges (libel law being a significant factor which chills public debate in the UK).

Meeting Matthew Swindells

As expected given the fact I’d been invited to the meeting Matthew was very positive about NHS bodies operating more transparently. He operates within the law as it is, he doesn’t make the law, but what he, and NHS England, can do is set out what good practice looks like and they can find out, and monitor, what is happening around the country. Currently local NHS bodies though have the power to make their own rules and procedures.

If we get to a point where good practice guidance exists but isn’t being followed then might well make a good case – demonstrating the need for a law to give the guidance strength.

Swindells told me that he thought that NHS meetings should be truly public; which I took to be agreement that there shouldn’t be excessive restrictions on what members of the public observing can do. We discussed some of the challenges which are made to filming and recording and Swindells said he didn’t think that the mere presence of patient reps on governing bodies should prevent the recording of meetings; such people have made the decision to publicly release the fact they have been a patient at an institution when standing for election, and their names, and usually photos, are on institutions’ websites.

We didn’t agree though on the question of if those taking part in “patient story” elements of public meetings ought be allowed to make their presentation without being filmed, photographed, or recorded. Swindell’s initial view was that they should given the opportunity to make their contribution without cameras or recording. I think this is a bit of an odd position given anything they say could still be reproduced verbatim, along with their photo, on the front page of the local paper – and if it was morally the right thing to do that realistically could happen.

Swindells said that Sustainability and Transformation Partnerships will need to be come more open as they take on more roles; and impressively he noted that proactive publication of material was even better than responding to Freedom of Information requests. As for now though, where STPs bringing people and organisations together who have been competing rather than working together for many years Swindells suggested there could be some benefit to allowing them some time to thrash things out behind closed doors; I suggested secrecy breeds suspicion and people are already worried about what could be being discussed by STPs in private.

My Experiences:

Cambridgeshire and Peterborough Clinical Commissioning Group

Over many years I campaigned against Cambridgeshire and Peterborough Clinical Commissioning Group’s stance on reporting, and in particular I drew attention to section of their constitution stating:

Use of Mechanical or Electrical Equipment for Recording or Transmission of Meetings
Nothing in these Standing Orders shall be construed as permitting the introduction by the public, or press representatives, of recording, transmitting, video or similar apparatus into meetings of the Governing Body or Committees thereof. Such permission shall be granted only upon resolution of the Governing Body.

While this rule has now been removed it hasn’t been replaced with anything welcoming, or even permitting modern reporting, they’ve just deleted the embarrassing ban on “mechanical or electrical equipment” being used without a resolution of the Governing Body permitting it. It was never easy to find out if a resolution permitting filming had been passed.

I’ve had no problems reporting on the joint NHS England – Cambridgeshire and Peterborough Clinical Commissioning Group GP commissioning committee, but again there is no positive encouragement for reporting and filming and no published rules.

Cambridge University Hospitals NHS Foundation Trust – Addenbrookes

When I tried to film and report on an Addenbrookes Council of Governors meeting on the 22nd of February 2017 I was unable to do so. The Governors had no published rules for, or against, filming, but the meeting was held within the hospital and the hospital Chief Executive Roland Sinker told refused to let me be present in the building with a battery in my recording equipment, he suggested that his actions were due to a law, but he was unable to cite the law in question. When I suggested he might be making up his reference to a law his response was: “No. I’m the Chief Executive”.

The trust said it would consider the matter at a board meeting in March, and write to me. The minutes don’t show any discussion and I’m still waiting for the trust to contact me, as they promised to do.

I’ve followed this up with local councillors, and the local Healthwatch organisation.

Cambridgeshire and Peterborough NHS Foundation Trust – Mental Health Trust

Section 21.4 of the Cambridgeshire and Peterborough NHS Foundation Trust constitution states:

Save as set out in clause 21.7 below [which refers to recordings by the trust secretariat] no one may record proceedings in whole or in part of Council of Governors meetings using electronic devices except with the express permission of the Chair. Members of the public and governors may record proceedings in writing using pen or pencil and paper.

When I sought permission for anyone to use modern methods to report on the meeting, I was only permitted to record responses to questions I asked. I wasn’t even allowed to record my own public questions to the Governors.

I obtained an entirely mechanical camera in order to report on the meeting within their rules, without requiring special permission.

I have asked the Governing body to reconsider their rules, but again I’m still awaiting action. I’m also still awaiting a response to a Freedom of Information request for any official audio reporting of the meeting, and material presented on-screen at the meeting.

Cambridgeshire and Peterborough Sustainability and Transformation Partnership – Fit for the Future

Cambridgeshire and Peterborough’s Sustainability and Transformation Partnership doesn’t pro-actively publish any information about its governing “Health and Care Executive”; a Freedom of Information request for meeting minutes has not been responded to by the STP itsself, and the Clinical Commissioning Group has refused to release its copy of the minutes stating making them available would prejudice “the effective conduct of public affairs”.

The STP itself hasn’t replied; I suspect because if it did it would seek to deny it exists as a distinct entity subject to FOI, but it has a chair, a board, a website, a twitter handle, and most importantly a a memorandum of understanding setting it up as a partnership.

Challenges to Transparency

I have heard, three concerns about reporting from public NHS meetings using modern technology:

• Reporting might increase the audience for any accidentally released confidential information.
• That it wouldn’t be appropriate to report on the common “patient story” and similar elements of meetings.
• Reporting might put people off using the opportunities for the public to lobby at such meetings.

My comments on those: confidential material should never be accidentally released at public meetings, it’s not reasonable and proportional to make rules based on the risk of something which should never happen. If an accidental release did occur then the public, as with others present, can be expected to act in a moral, legal and generally responsible manner, especially if a problem is drawn to their attention.

Those deciding to share their experiences in public do so fully aware of what they are doing; it becomes legally permissible to publish information people may decide to disclose about their health if they deliberately decide to make that information public. That said those present need to act responsibly and chairs need to be prepared to challenge, especially if, for example, members of the public start revealing a third party’s sensitive personal information.

Decisions about NHS policy, strategy and spending are hugely important public decisions. Huge sums of public money are often involved and there can be huge impacts on people’s lives; those lobbying for changes to strategy and policy should be doing so in public; it would be wrong if the Governing bodies were hearing from certain people behind closed doors. For a decision making process to be public you have to be able to see the advice and the deliberation not just the final vote. I don’t think there is a strong case for anyone being able to lobby a public meeting in private, or with reporting restrictions imposed (not that NHS bodies are empowered to impose reporting restrictions!).

Changes I’d Like to See:

I would like to see a similar right to report, record, film, photograph, etc. applied to key NHS meetings as applies to local councils, following the new law which was introduced in 2014.

I’d like to see NHS bodies positively welcome, and encourage, reporting of their activities.

In terms of Freedom of Information law I’d like to see all Sustainability and Transformation Partnerships respond to FOI requests, and pro-actively publish basic transparency information such as board minutes.

I’d also like to see much greater democratic accountability of NHS bodies. I think there should be a much greater role for local councillors in running the NHS locally. Local councillors have a much stronger mandate than those elected in NHS specific elections which relatively few people are aware of, and in which even fewer are registered to vote.

The Government is already telling the NHS it should operate more transparently, the current NHS mandate a document from the Health Secretary setting out objectives for the NHS contains many references to greater transparency, but it could do more.