Health and Social Care Information Centre

A principled stand: Dr Gordon Gancz, of Oxford, is fighting the government’s plan to sell his patients’ confidential records to private companies for profit.

A refreshing change seems to be sweeping through local news media here in the UK, with stories starting to appear about people who are fighting unjust behaviour by the government.

The rest of us should support this.

For example: Workington woman Jeanette Johnston, 29, had a job until recently but has been forced to give it up due to congenital health problems which mean she has already had a kidney removed and will need a heart and lung transplant in the future.

She had been receiving Disability Living Allowance but this was stopped last August after aids including bed ladders were fitted at her home, following recommendations from an occupational health expert.

DWP advisors told her that the benefits would stop until she was reassessed for the Personal Independence Payment (PIP) – and she has now spent half a year waiting for that appointment.

Jeanette’s tale raises several questions. Why does it take so long for anyone to have the now-legally-demanded medical assessment of their disabilities? Could it be because benefits are stopped until those assessments take place, and it is a chance for the government to claim benefit savings? This seems extremely likely.

Also, Jeanette’s benefit was stopped after living aids were installed in her home on the advice of an occupational health expert. The government has just announced a plan to let employers send occupational health experts to advise workers who are off sick for more than four weeks. Does this signify an intention to deprive people of sickness benefits?

Finally, we should note that Jeanette’s condition is serious, involving a heart condition – and it is entirely possible that the stress of trying to make ends meet could worsen her health enough to hospitalise her or even end her life. Is this the government’s intention? If so, then we should all be asking questions about criminal intent.

Elsewhere – in Oxford – a local doctor is defying plans to collect patients’ confidential information and sell it to businesses.

Vox Political has reported on the plan many times in the past, focusing on patients’ right to ‘opt out’ of the scheme, called variously the Health and Social Care Information Centre, the General Patient Extraction Service or simply care.data by the government.

The records are said to be ‘pseudonymised’ by the government – an attempt at hiding patients’ identities that, in fact, allows anyone buying the information to work out the personal details of everybody on the list if they so choose.

Oxford GP Dr Gordon Gancz said: “It removes my right to protect my patients’ confidential information.” He has vowed to take the government to court if it takes action against him.

Both of these stories have been reported in the local press, where the online versions have ‘comment’ columns to which readers can post opinions. It seems likely that the papers involved will also have letters pages.

If you believe that the delays caused by the government disability assessment system are dangerous, you can say so – directly, to the newspaper. If you believe that Dr Gancz is right to protect his patients, you can say so – directly, to the newspaper.

I’m not going to urge you to go and do it because – as we all know – the Department for Work and Pensions took a previous comment of this kind as evidence that I was co-ordinating a campaign of harassment against it (new readers: this is not a joke!) and a future such incident would not help anyone.

But it seems likely that a few words of support for these people, in the pages of their local paper, might help rouse other readers into declaring their own opinions.

It is easy to keep people quiet about controversial changes when they think they are the only ones who are concerned; it’s not so easy when people have evidence that others feel the same way.

What are you going to do?

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It seems the government has found a way to dissuade GPs from letting patients opt out of having their medical records sold to private firms – the threat of penalties or even an investigation into the way they run their practice.

Vox Political revealed earlier this month that the government is planning to make a profit from selling the private records of NHS patients in England to healthcare and pharmaceutical firms.

The records are said to be ‘anonymised’, but in fact anyone buying your details will be able to identify you.

The system, originally called the General Patient Extraction Service (GPES), now the Health and Social Care Information Centre, may also be described as the care.data scheme. Health Secretary Jeremy Hunt wants you to think the information will be used for medical research and screening for common diseases, but in fact it could be used by private health companies as evidence of failures by the National Health Service, and could help them undercut NHS bids to continue running those services – accelerating the privatisation that nobody wanted.

Patients have the right to withhold their data, but they must specifically inform their medical practice of their wishes. This is why medConfidential created a web page containing a special opt-out form, along with a form letter in various formats, allowing patients to opt out themselves, their children and any adults for whom they are responsible.

Now GPs are living in fear of reprisals if they don’t deliver enough details to the new system.

According to GPonline.com, Health minister Dr Daniel Poulter failed to rule out penalising GP practices with a higher-than-average proportion of patients opting out of new NHS data sharing arrangements.

In a written answer to Labour MP and health select committee member Rosie Cooper, Dr Poulter also refused to say what level of patient opt-out from the scheme would trigger an investigation.

Asked whether practices would be penalised, who would investigate practices with a high opt-out rate, and at what threshold this would apply, Mr Poulter said: “NHS England and the Health and Social Care Information Centre will work with the BMA, the RCGP, the Information Commissioner’s Office and with the Care Quality Commission to review and work with GP practices that have a high proportion of objections on a case-by-case basis.”

Ms Cooper took this as an admission that GPs were “being threatened and bullied into ensuring patients don’t choose to opt-out”.

Reacting on Twitter, NHS national director for patients and information Tim Kelsey ruled out fines for practices where large numbers of patients opt not to share data. He wrote: “Nobody is going to get fined if patients opt out.”

None of this offers a good reason for you to leave your medical records unprotected – in fact, it gives you more reasons to opt out than before, and might provide GPs with the excuse they need to retaliate.

Doctors have been pushed further and further by the Conservative-led government’s changes to the NHS. For example, they were told they would have a greater say in where the money went, as members of Clinical Commissioning Groups (CCGs), but that was not true – they don’t have the time to take part in such decisions so they have been handed over to firms that are often part of the private companies now offering services to the NHS (for a price).

Now they are being told they may face reprisals if they do not betray the principle of doctor-patient confidentiality.

But you can only push a person a certain distance before they push back.

How will NHS doctors in England respond?

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