The plan to put your health records in a computer cloud – the next expensive mistake by the NHS?

New World of NHSX doctor talking to patient once they have digitalised all patient records Pic credit: Gov.uk

NHSX, the new body behind the covid 19 tracing app,is planning a further IT revolution which will be a bonanza for multi national tech companies

Probably everybody remembers the fiasco under Labour to introduce a national computer system linking the whole of the NHS. The ten year programme which never worked properly was abandoned in 2011 after wasting some £10 billion of taxpayer’s money.

But now NHSX, the new body set up by the government in July 2019 without any Parliamentary approval and virtually no oversight outside the NHS, is planning a new national system to centralise NHS patient records.

I wrote about it last week in Byline Times following the publication of a report by the National Audit Office on NHS Digital.

Most of the press reports concentrated on the back story that the NHS was s in a digital mess and that a £8.4 billion programme under way to modernise the system had still not everything right- with 46 per cent of trusts relying on paper for patient records.

The real story was at the end of the report where the NAO raised a red flag about a plan to put everybody’s patient records in a cloud which has still not been fully worked out by NHSX.

It says NHSX is working on creating communication protocols known as Application Programming Interfaces (APIs) which would go through different layers so they could transfer patients’ data from an individual health trust or GP surgery to a cloud. This is similar to people transferring their own personal data and files on their computer or smart phone to a Google cloud.

A NAO spokesman said: “The use of APIs with a data layer, is at an early stage. It does not have a clear scope yet, so we are unable to comment on its implementation, much less how it affects the Covid-19 response. But we note that other parts of government found similar approaches to be difficult and expensive.”

The NAO also revealed that unlike the first failed computer system – which was paid out of general taxation – the new cloud service will come out of general day to day running costs – which means if it goes wrong the cash will be taken from patient services and given to tech multinationals to solve the problems.

More seriously how safe are your records when this happens. Already NHSX has had the embarrassment of computer magazine Wired discovering they had left future plans for the app – publicly accessible through Google Drive – by mistake.

Image how you will feel if your personal health records were hacked and sold on to commercial interests.Or some computer error released sensitive infoirmation. This plan needs to be thoroughly scrutinised before it goes ahead. Or it will be a waste of money and a possible security risk to your sensitive personal information.

Covid-19: NHS chaos and DWP indifference lead to tragedy for one 50s born woman

And why the BackTo60 Facebook crowdfunder is essential to bring these sad facts for many more to light

The family of Ray and Lesley Myers with daughters Nicola and Jenny in happier times.

This is a tragic tale that I suspect is being repeated across the UK now we have the largest number of deaths in Europe. It gives a little glimpse into the human cost behind the cold harsh statistics of the daily death toll. Her daughter contacted me and she agreed to be interviewed.

Ray and Lesley Myers thought they had their retirement well planned. He would get his pension at 65 and one year later she would get hers at 60.

He was a successful Welsh speaking self employed builder in North Wales. They had a comfortable four bedroomed house and two lovely daughters.

Then at 60 Ray developed cancer and was unable to work. They downsized from their four bed house to a one bed apartment in Chester.

Through the help of the NHS Countess of Chester Hospital & The Hospice of the Good Shepherd he was tackling his cancer and they were still looking forward to many more years together.

This winter Ray got pneumonia and went into the Countess of Chester Hospital. He got better , came out of hospital, but then fell ill again and was re-admitted.

Unfortunately for him he came back just as the Covid-19 was starting to spread across the UK. The doctors there also tried to press him to sign a ” do not resuscitate” form.

According to Lesley Myers the hospital did not have the right equipment to safeguard the staff or patients relying on paper masks and aprons. But they did regularly test him for Covid- 19. Three tests were negative, the last one was positive.

From there he deteriorated rapidly but his family heard nothing from the hospital and couldn’t visit him. Finally they allowed Lesley to visit him and provided her for the first time a gown and a medical mask. By then he was in a coma and close to death.

On April 7 aged 70 he died. The family have not been able to organise a proper funeral.

But the hospital have followed up her case and have got proper protection equipment and are changing the way they handle future cases.

Lesley then encountered all the problems from the Department for Work and Pensions. She was hours on the phone trying to claim bereavement benefit. The DWP just cut her off.

But they acted very quickly to stop his state pension,PIP, and ban her from being able to drive his mobility car. They still haven’t bothered to collect it one month later and it is parked at the apartment.

She found herself left with living on £420 a month – £320 from her own PIP as she is disabled and just £25 a week bereavement benefit. The widow’s pension has been abolished by the DWP. She has bills of £150 a month for council tax and another £100 for the apartment management charge.

She said :” How I am supposed to survive on this on this amount?
” I do have savings but do not know how long I will live for so do not wish to rely solely on this as I’m sure you can appreciate – I am only 64! “

“I am fortunate to have the support of my daughter and some savings but I ask you this for someone with nothing and all payments stopped immediately how would they now continue?
“I am very concerned for other people left in the same situation or worse off than myself.
” I do not like to complain, I have expressed my sincere gratitude to the hospital for their care and my daughters have raised nearly £3000 for them and the Hospice of the Good Shepherd in memory of my husband and in order to help them both at a difficult time.
I feel like a statistic, and this is not right. I am a person who also needs to survive”.

She said her situation would have far better if she had already got her pension as of right.

” I have supported BackTo60 for a long time and I feel it is disgusting that they changed the pension age without properly informing people. I have paid in since I was 15. We are entitled to that money and there should be full restitution.”

BackTo60 have just launched a £10,000 crowdfunder so they can keep the issue in the public eye right up until the judicial review appeal in July.

They intend to use the money for a film that will highlight how Covid-19 has made life worse for many 50s women already suffering in poverty and having difficulty making ends meet.

You can donate to the crowdfunder here. It is something that needs exposing.

On Byline Times: WHO guidelines ignored to shield over 60s because UK “not a developing nation.”

My first new article on Byline Times reveals the reason why the government is sticking to shield only those in their 70s rather than follow World Health Organisation guidelines to shield the over 60s. It is because the UK thinks this should only be applied to developing nations.

This disputed by WHO who point out that 95 per cent on the deaths in Europe are among the over 60s with France, Italy and Spain responsible for the vast majority of European deaths.

The article highlights the plight of people in their 60s – most of them still working because of the rise in the pension age – with some left with no money as jobs collapse and others working in the NHS where the risk of Covid- 19 is at its highest.

Read the full story on Byline Times here

Back to Work: Restarting investigations

Back to Work even if Westminster is closed – except for virtual contacts

This is just a note to my readers that after an absence of nearly three months I am now back in rather a different England that I left in January.

I have been extremely lucky as the trip I took with my disabled wife sailing round the whole of South America was about the safest place to be at the time – as the ship kept ahead of the spread of COFID 19 until the every end.

Then a very wise captain decided not admit any new passengers or crew when we docked at Fort Lauderdale and only allow passengers to disembark – not even go ashore and return – protecting the ship from the virus.

We then sailed straight for Southampton and were able to dock without facing the terrible fate some cruise liners had to endure where passengers had caught the disease. Cunard deserve a lot of praise for this. I will put up a blog with lots of pictures of what we saw in South America at a later date – as an antidote to today’s gloomy situation.

But now having had to painfully adapt to the new situation and look after and protect my wife from this invisible scourge I am back to investigating from home again.

I have a lot to catch up. I am planning fresh articles on developments on the BackTo60 campaign and the continuing plight of #50sWomen now hit by the fall out from the coronavirus. While I was away their victory at the Court of Appeal to challenge the findings of the judicial review on all grounds was an amazing achievement.

I am also back working for Byline Times which is doing a series of investigations in to the NHS and the coronavirus and I will keep an eye out for any other issues in Whitehall that are being buried by the current crisis.

I also have a number of more long term and complicated investigations – nearly all raised by people who contacted me directly and are taking many months to sort out. You will know who you are but I ask you for some patience as it will take time to get round to them.

In the meantime it will soon be back to business as usual.

Revealed:The chaotic free prescription and dental treatment scandal

An example of an attempt to check whether you are entitled to a free prescription by Trent Valley Surgery

If you are under 60 and over 16 do you know when you can get a free prescription and free dental treatment? No, if you don’t you are in good company and if you claim could even be one of 1.7 million people in England falsely sent a £100 penalty by the NHS.

A absolutely scathing report out today from MPs on the Commons Public Accounts Committee today describes the whole system for regulating free prescriptions and dental services as ” not fit for purpose “.

It reveals that despite a so called 24 page ” simplified ” guide telling you when you qualify most people are completely confused and rightly so.And if you get it wrong you are automatically guilty of fraud and get a £100 penalty fine rising to £150 if you don’t pay it promptly.

The report said :” Exemptions from prescription and dental charges include age, maternity, receipt of certain means-tested benefits, low income, and long-term medical conditions in some cases, although we are told that this list of long-term conditions has not been updated for 50 years [YES 50 YEARS -my point] save the addition of cancer in 2009. “

Worse qualification for a free prescription does not automatically qualify you for free dental treatment. And if you are on Universal Credit your right to claim will vary from month to month depending on your income.

The report says : “There is currently no way of indicating receipt of Universal Credit on prescription forms, resulting in more confusion, and the Department for Work and Pensions does not confirm eligibility when they write to claimants about their confirmed benefit entitlements.”

The result of all this chaos is that since 2014 no fewer than 5.6 million penalty notices have been issued and 1.7 million have had to dropped once the person challenged it because it was found out they were entitled to claim.

Naturally the threat of penalities has made vulnerable people more frightened of going to the dentist for essential treatment in case they were fined and to get prescription medicines.

Worse the policing of the system to prevent fraud has been an abysmal failure. The report found “nearly 115,000 people have received five or more PCNs [penalty notices] for prescriptions, over 1,600 have received 20 or more—yet only five cases have been referred to the Crown Prosecution Service. Only one has been heard in court ” Yes that it right one court case.

And anyway the NHS does not have a proper system for collecting the debt – relying in part on Capita.

The MPs said: “The PCN process generated a net yield of £25 million for the NHS, a pitiful sum compared to the annual cost of prescriptions which is around £9 billion. We do not dispute that it is right to try and deter fraud and recover costs mistakenly paid by the NHS, but the current system is not fit for purpose.

Now there is a simple high tech solution to check prescription entitlement in real time – and the government is committed to eventually introducing a computerised system. It is trialing one now in just four chemists. How pathetic is that.

Meg Hillier, chair of the committee, makes some very pertinent points .

Patients find it very confusing to understand whether or not they can claim free prescriptions or dental treatment because of a convoluted system that causes patients, in some cases, distress.

“A presumption of guilt means penalty charge notices are issued too readily, particularly where vulnerable people are concerned. Yet where there is clear evidence that people are persistently committing fraud by making false claims, there has been a failure to take effective action.

The Committee fully support efforts to deter fraud and pursue those who claim exemptions to which they are not entitled to but the current penalty notice system is cumbersome, inefficient and not fit for purpose.

The Department should substantially overhaul the system, so that those who are rightfully entitled to free prescriptions and dental treatment get the exemption they deserve.”

Over to the NHS to sort out this scandal – one among many. MPs want to call officials back next year to explain how they have solved it.

Suspicious deaths of the elderly in hospital: An appeal for people to contact me

NHS-logo

Appeal for people to come forward over suspicious elderly relatives deaths in hospital

CROSS POSTED ON BYLINE.COM
For the past four years I have been a member of the Gosport War Memorial Hospital Independent Panel that concluded that at least 456 elderly people had their lives shortened as ” a direct result of the pattern of prescribing and administering opioids that had become the norm at the hospital.”

Since publication of the report the events at Gosport are now the subject of an independent police inquiry so I cannot take up any cases involving Gosport.

However since the report’s publication a number of people have contacted me on  my website with allegations of a similar nature in other parts of the country,

As a result I have started investigations into these and would welcome other people –  relatives of  former patients, NHS staff  or lawyers representing them- to contact me in confidence as I am actively looking at this issue.

The aim will be to publicise and investigate  these fresh allegations to find out what happened to their relatives  and seek explanations from the various  hospitals who were responsible for their treatment.

You can get in touch with me by clicking on the contact me heading on my website or through byline.com. I  look forward to hearing from you.

 

 

 

Fifty Shades of Child Abuse: How a brave survivor is pioneering a fight back in Cumbria

Resilience Film 2

A snapshot from the Resilience film being shown across Cumbria

CROSS POSTED ON BYLINE.COM

Cumbria is amongst the first regions in England to try and tackle the poisonous chalice of adverse childhood experiences (ACEs), including child sexual and physical abuse using medical science developed in the United States and extensively trialled in Southern California and now here in the UK.

The Cumbria community initiative, known as The Cumbria Resilience Project, comes from a 61-year-old survivor himself – a victim of the notorious paedophile and abuser John Allen – sentenced to life imprisonment on 33 counts of sexual abuse against 19 boys and one girl- aged between 7 and 15 – while running a children’s home in North Wales. Allen like so many paedophiles denied all of this and claimed the people making the allegations all wanted to make money. But the jury at Mold Crown Court disagreed.

The  anonymous survivor has just written a very readable  book – available from Amazon here for £7.99p  – Aces in the shadows – Understanding Adverse Childhood Experiences.

He thought he might call it 50 Shades of ACEs because of sadly the variety of adversity, including physical, sexual, and bullying abuse (some inflicted by other traumatised children as well as adults) which damages thousands of children in their homes, schools, places of safety and in war zones and among refugees.

ACEs science comes from a health questionnaire used in the CDC-Kaiser Permanente ACEs Study, which is one of the largest investigations of childhood abuse and neglect and later-life health and well-being in the USA, can now be used by GP’s and trained counsellors to act as a gauge on how deeply traumatised children and adults have become following adverse childhood experiences through abuse, neglect and household challenges, often caused by members of their family, teachers, children’s home staff , and priests leading to perpetual mental and physical health outcomes in later life including Cancer, Ischemic heart disease, Liver disease, Alcoholism, Chronic obstructive pulmonary disease and Depression.

The science, now accepted by the World Health Organization (WHO), shows beyond any doubt that a child’s growing brain can be arrested by such traumatic experiences, but the brain’s plasticity and the building of resilience can help people recover in later life. The book includes views from three professionals, Al Coates MBE, a social worker; Judy James, a coach-therapist; and Laura McConnell, a teacher and ADHD campaigner, on how to tackle this. The survivor adds his own views.

With a score of 10 ACEs, the anonymous survivor has endured it all – three marriages, fathered eight children, 40 sexual partners, 34 homes, two bankruptcies, copious drink and sleeping pills and a range of health conditions. Only the unconditional love of his third wife helped pull him through after years of therapy.

His psychiatrist diagnosed that he suffers from complex Post Traumatic Stress Disorder – something ( which I will return in a later blog) the authorities don’t wish to know about because of the expense of treating it. He concludes : ” I do not believe however he is likely to make a complete or rapid recovery because of the duration of his symptoms since childhood.”

The good news is that such episodes have become rarer while the work he is doing in Cumbria is growing beyond anything he could have expected.

” Cumbria might appear to be a beautiful place but behind the beauty are some of the highest numbers of sexual and domestic violence offences in the country,” he told me.

The Cumbrian Resilience Project has already attracted more than 300 members belonging to its closed social media forum. It also has free viewings of a film called RESILIENCE – The Biology of stress and the science of hope which explores the damage done to the body by the toxic trauma of  repeated adverse childhood experiences as a child and puts forward a scientific way of tackling it. Film showings this autumn will be in Carlisle, Penrith, Workington, Barrow, Eden Valley and Kendal to name but a few.

Interest has been shown by Cumbria Police, Cumbria NHS and across the care sector and the project founder is planning ACEs awareness training sessions for parents, social and care workers, and all frontline staff so they can understand what is needed to help children and adults affected by ACEs. Sessions this year are being held in Workington, Carlisle, Penrith and Barrow.

The project relies enormously on volunteers and survivor champions. But I hope when the Independent Inquiry into Child Sexual Abuse (IICSA) moves on to discuss how to help survivors that projects like these (they are more widespread in Scotland) are advocated on a national level. The author is a Core Participant in the inquiry and hopes to have the opportunity to raise issues of ACEs at the inquiry later in the year.

Among the supporters of the project are Graham Wilmer, who runs the Lantern Project on the Wirral :

He says: “There are people out there who are trying very hard to undermine the courageous efforts of survivors of child abuse to come forward and give their testimony. Some of these individuals claim to be survivors themselves, others include a diverse range of individuals, some professionals, others just perhaps misguided folks without much else to do, who, through the advent of social media, believe they have a right to call out and abuse anyone they want to, simply because they can.

“That will change, but, in any case, they matter not. It is the voices of those who had the courage to speak truth to power that will be remembered, not the voices of those who tried to stop them.”

Another is Dr Wendy Thorley who described the book as a ” An open and unrestricted account of the impact on ACEs for not only children but adults. The bravery of the author to put this in the public arena is not unrecognised.”

I would recommend it – the author does not go for intellectual sophism – but is direct, honest and tells the unvarnished truth – and it is all the better for that.